Category Archives: Treatment

Nov27

Tuesday Q&A: Stephen Johns

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Not to brag, but I know Stephen Johns because he loved my book and got in touch with me (I never get tired of hearing from people, no matter how we happen to connect). And let me tell you, he has so much knowledge and insight to share about obsessive-compulsive disorder (OCD), he could write a book himself. He’s blogged quite a bit about his experience, and today he’s sharing his story with us! Thanks for being here, Stephen.

How long have you had OCD, and when did you start experiencing symptoms?

I can actually pinpoint the exact date I first experienced OCD symptoms: Saturday, March 9, 1991. I was 10 years old. My parents and I were driving from our hometown, Thunder Bay, Ontario, to Minneapolis to see a hockey game, and had stopped to get gas in a place called Grand Marais, Minnesota. I was feeling restless, so I went into the service station…and walked right into one of those old-fashioned (and, at least in Canada, now illegal) cigarette displays.

A thought popped into my head, as literally as anything’s ever popped into my head: “I want to smoke.” I felt as though I’d been punched in the stomach. The idea felt completely foreign. I knew I didn’t want to smoke…didn’t I? But the thought took hold, then metastasized. It reached a point where I couldn’t so much as even look at a cigarette—whether it was in someone’s mouth or butted out on the ground or even hidden inside a pack—without panicking. I thought about smoking from the moment I woke up till the moment I went to bed. This lasted five months, and then one day I told my mom about the unwanted thoughts. Her succinct response: “If you don’t want to smoke, you don’t have to.” That was all it took! The obsession went away. So did OCD, for that matter—for 15 years. I went through high school and university without experiencing a significant OCD spike. The closest I came was a well-known (and well-mocked) dislike for lower-case y’s, but that wasn’t debilitating so much as it was just plain odd. I also experienced anxiety over relationships, which, in retrospect, could have been OCD-related, but I think it had more to do with my main dating role models being the characters on Seinfeld.

Then, in 2006, I was living in Toronto and working my first “real” job out of university. I was forced to wear a shirt and tie, and for some reason this threw me into an existential crisis, which led to my second major OCD flare-up. It was my first encounter with harm OCD and the only time in my life where I felt as though I was genuinely losing my mind. I can still vividly recall the first time a harm thought popped into my brain. It was terrifying. The week that followed was torturous. I couldn’t sleep—but then couldn’t function at work, so I’d mainline coffee, which in turn exacerbated my insomnia and the suffocating anxiety. I couldn’t eat; half of what I ate I eventually threw up. I had no idea what was happening to me. But I knew it was bad, and I started looking for help.

When—or how—did you realize what you’d been experiencing could be OCD?

I didn’t get an official diagnosis till I was 31—21 years after my symptoms first presented themselves. Prior to that I’d seen a doctor who figured I had some sort of generalized anxiety; his succinct advice was, “You need to get out and run.” Later I got a similarly vague diagnosis from a psychosocial oncologist, which nonetheless contained three particularly useful nuggets of information: that I might have OCD; that OCD could be predicated on unwanted thoughts; and that incidents of childhood strep throat could predict OCD later in life. I’d had strep throat so often I can still practically taste the awful grape medicine. But the real eye-opener was the revelations that unwanted thoughts could constitute OCD.

I wouldn’t be formally diagnosed for another five years, but then I actually got two diagnoses for the price of one. I wasn’t chasing after multiple diagnoses in order to confirm their validity: they just happened to arrive within a month of one another. One was from a psychiatrist, the other from the psychologist with whom I’m still working.

Once you were diagnosed, how did you go about treating it?

Following that second, vague diagnosis I began taking antidepressants, which quieted the thoughts—but then I moved across the country, from Toronto to Calgary, and my symptoms stayed behind. I paid lip service to getting help for my OCD the following year but lacked the proper understanding of exposure and response prevention (ERP) therapy to following through (and I was asymptomatic, for that matter, which reduced my motivation). It took a third major flare-up, in 2012, for me to finally confront my OCD—and even then it took three months before I found the right person to treat me. (The third flare-up was my token encounter with homosexuality OCD—HOCD. Dr. Reid Wilson’s immortal line—“Content is trash—it’s trash!”—reverberates here because I actually met my future wife while I was having that spike.)

The first person I saw following that flare-up was a social worker masquerading as a psychologist. I knew within the first couple appointments that he wasn’t a proper fit—but I’d also read that OCD sufferers have a habit of running from perfectly good treatment providers, so I decided to stick with him. My resilience crumbled during the appointment in which I found myself lying face-down on his office couch while he ran a magnet up my back, claiming he was trying to synchronize the neurons (yes, this really happened). After that experience I went home, Googled “OCD specialist Calgary” and found Dr. Felicity Sapp. She and I have been working together ever since. Ironically, my symptoms worsened following our first meeting. I felt as though I needed more support than I was getting in Calgary, so I moved back to Toronto and back in with my parents for two months. In retrospect that might’ve been a compulsive decision—but those two months effectively reset my brain, which enabled me to tackle ERP head-on. I came back to Calgary, and my job, in much better shape. I treated ERP like a part-time job; indeed, whenever I’ve lapsed since then I’ve been able to dive right back into it, which has been a major factor to my treatment success. I’ve also tried hard (and, for the most part, successfully managed) to stay positive throughout my OCD journey. It’s easier said than done, but it’s been a critical factor. Pro tip: mirrors give great high-fives!

I’ve also focused on other treatment techniques as well, in particular sleep, exercise, and diet. I cannot stress the value of holistic recovery enough.

Do your friends and family know you have OCD, and how it manifests? If so, how did you go about telling them?

Everyone knows I have OCD. Few people know how it manifests beyond “bad thoughts,” and given the content of those thoughts is trash I don’t see much value in talking about it in too much detail. I’m an open book when it comes to mental health: I’ve been writing about my OCD for years, and from 2012 to 2016 I blogged for a Canadian organization called Partners for Mental Health. It never occurred to me that I should be ashamed of having OCD any more than I’m ashamed of having had cancer (I was diagnosed with, and subsequently treated for, a Wilm’s Tumour when I was three years old). The only negative response I’ve ever gotten was from a girl I briefly dated in 2012. Her reaction said a lot more about her than it did about me.

You travel pretty extensively for work. For some people with OCD, that could be a recipe for misery. How do you cope with or anticipate triggers while you’re on the road?

I travel semi-regularly, though not nearly as much as I used to (and thank goodness for that!). I genuinely love my job: twelve years into my career I still sometimes pinch myself because someone pays me to do what I do. That said, travelling for work isn’t usually glamorous: it’s frequently challenging and, like you said, sometimes a recipe for OCD misery. My symptoms tend to flare up whenever I’m on the road. I’m sensitive to the slightest variations in my sleep schedule, so getting on a plane and flying to Southeast Asia for six nights (like I did the other week) can wreak absolute havoc.

Having said that, I refuse to avoid travel, because it’s something I love and that I’ll be doing (whether in a professional or personal capacity) for the rest of my life. Ultimately, I’ve come to expect flare-ups whenever I travel, which mitigates their intensity. Then, once I’m out on the road I stick to my self-care regimen as much as possible. Sleep remains the key component, as well as the most challenging: our bodies simply weren’t designed for jet lag. (That Southeast Asia trip was brutal in that regard. I left Toronto late on a Tuesday and didn’t arrive in Indonesia till Thursday afternoon. In other words I spent two consecutive nights on airplanes—and no, I don’t fly business!) I eat as well as I can. I drink a lot of water (plus, inevitably, a lot of caffeine). And when symptoms do inevitably materialize, I try my best to remind myself that these trips are wonderful exposure opportunities. That’s easier said than done when you’re ravaged by jet lag, separated from your people, and getting slammed by intrusive thoughts—but it’s also critical, especially since I’m usually asymptomatic outside of travel. I need opportunities to practice my cognitive skills, and travel, for better or worse, provides them.

At the conference last summer you presented with your therapist. Did you ever imagine you’d go from the depths of OCD to sharing your coping skills and knowledge with a room full of people? 

Are you kidding? Six years ago, when OCD had forced me into taking a leave of absence from work and moving back in with my parents, I’d have settled for the ability to drink coffee without turning into a puddle of nerves (“I could tell you what it takes to reach the highest high—you’d laugh and say, ‘Nothing’s that simple’,” as Pete Townshend put it). I just wanted my old life back; anything else would’ve been a bonus. As it turns out I did get my old life back—and then built a new, incredible life I never could’ve imagined from the depths of OCD despair. ERP is hard; indeed, you’ll sometimes hear it said that recovering from OCD is harder than having it in the first place. I don’t think that’s true: ERP is difficult, but it’s so worth it, and life in recovery is so much better than life with OCD. If you’re struggling, either with OCD in general or with ERP in particular, just know it’ll be worth every single ounce of effort. Progress isn’t always linear. Sometimes you’ll be feeling great; other times you’ll feel so awful you’ll think it was a mistake doing ERP in the first place. Keep pushing.

I’m not “cured.” One doesn’t cure their OCD: one learns to manage their symptoms so that OCD has minimal impact on their lives. I’m blessed to be at that point. Having the opportunity to tell a roomful of people that recovery from OCD is possible was incredible and beyond anything I could’ve anticipated back in 2012.

You recently weaned off your medication—with the guidance of a doctor—and are now focusing heavily on nutrition. What has that experience been like?

Firstly, I need to stress that I am not anti-medication. It helped me get better; I’d start taking it again tomorrow if it were necessary. Secondly, I realize not everyone has the luxury of taking on OCD without the aid of medication. I’m one of the lucky ones who’s at least been able to give it a go.

I’d been taking medication off and on since 2006; at one point I was taking a combination of an antidepressant, a benzodiazepine, and an antipsychotic, the latter of which was prescribed as a sleeping aid (which, in retrospect, was very cavalier of my former family doctor). I weaned off all three in late 2014, but eight months later went back on the antidepressant: I hadn’t been feeling “right” and decided that withdrawal was to blame. It wasn’t. I was traveling non-stop during those eight months; I took upwards of 40 flights, crossed an ocean on eight separate occasions and at one point went to China for a long weekend before flying across Canada 16 hours after getting home. I’m tired just reading that! But I conflated tiredness with low mood, which I then decided meant I had to be on antidepressants despite never having taken them as mood enhancers (I don’t have a comorbid mood disorder). So I went back on medication, then experienced almost four months of hellish side effects.

That experience typified my frequently fraught relationship with medication. I tried reducing my dosage last year, then ran up against a major trigger and wound up right back where I began. And I was fine with that—but then earlier this year, with my life in a relatively calm period, I decided to give it another go. I didn’t actually plan on going off medication completely: when I started tapering back in February I said I’d have been ecstatic if I could cut my dosage in half. But following the second dose reduction I decided to give it a shot. I took my last dose June 12, and so far things have gone much more smoothly than last time. I attribute much of that to my life circumstances. The last time I went off medication I was living on the other side of the country from, among other people, my partner and my parents. Now I live with my partner (who is now my wife) and 30 minutes from my parents. I’m traveling a lot less. Things are stable; things are good.

Diet has had a major impact. I’ve been working with a dietitian to create a good “mental health diet,” the pillars of which are lots of protein, lots of vegetables, and little to no processed sugar. Exercise has also been important. But the biggest factor has been sleep. In fact, if there’s been a magic bullet for my recovery in general it’s a commitment to proper sleep hygiene, in particular by giving myself a (relatively) non-negotiable 8-½ to 9 hours’ sleep opportunity every night and having a consistent sleep schedule seven days a week.

In a perfect world, everyone would already understand what OCD really is. But since we live in this world, what misconceptions do you wish we could clear up? How do you think we can go about doing that?

I wish more people knew that unwanted egodystonic thoughts can be symptoms of OCD. That involves education—and telling our stories fearlessly. I’m not actually bothered by people using the expression “I’m so OCD.” I can honestly count the number of times I’ve heard someone say it on one hand; I feel as though it exists more as an internet meme than anything else. Hopefully by talking about what OCD actually is I’ll implicitly discourage people from misusing the term. Language is certainly important when talking about mental health, but I’m not about to bite someone’s head off if they mistakenly refer to themselves as being “so OCD.”

If you could give just one piece of advice to others with OCD, what would it be?

Just one? How about five?

  • Treat the disorder, not the symptoms. OCD wants to suck you into the specific content of your intrusive thoughts. But content is trash, as Dr. Reid Wilson puts it. Obsessive thoughts are symptoms of OCD. Trying to treat the symptoms instead of the disorder itself is akin to suppressing the physical act of sneezing when you have a cold.
  • Welcome slips. I know it’s easier said than done, but slips allow you to put your cognitive skills to the test. You actually need them in order to solidify your gains. And on a similar note, don’t view the absence of symptoms as the primary indicator of treatment success. It’s nice, don’t get me wrong, but you can’t control the symptoms. You can control your response, however. Responding to your intrusive thoughts and resisting your compulsions are worth celebrating on their own.
  • Work on your sleep hygiene. Sleep, to me, is the magic bullet; in fact, I’m at a stage in my recovery where having OCD symptoms usually means I just need to be sleeping more. One night’s sleep deprivation can activate our amygdala by as much as 60 percent, and given that the amygdala is responsible for sending the fight-or-flight response to our intrusive thoughts it stands to reason that a good night’s sleep can have a tremendous impact on our OCD. I give myself a relatively non-negotiable 8-½ to 9 hours of sleep opportunity every single night; I also stick to the same sleep schedule seven days a week. I cannot recommend Why We Sleep by Dr. Matthew Walker enough: it literally changed my life.
  • Don’t become obsessive about your recovery. Find the sweet spot between caring too little and too much (and, well, don’t become obsessive about finding the sweet spot—settle for finding someplace in or around the sweet spot). Last year I became monomaniacal about my recovery, but my commitment to recovery eventually spilled over into obsessing about recovery. I kept an OCD journal for four months in which I documented, among other things, flare-ups, mood swings, exposure activities, and sleep patterns (I thought Dr. Sapp was going to kill me when she found out). Dr. Steven Phillipson’s article about choice in OCD treatment completely changed my perspective on the recovery process. It helped me discover the importance of caring the right amount—and the less I obsessed about my recovery, the better I got. On a similar note, research is a double-edged sword. Learn about OCD, but be careful not to read too much about the disorder, because research can very quickly become a compulsion. There are some great OCD books available, but I’d caution against building a library of them. If you do, and if you’re not using them in your recovery, put them away (or, better yet, have someone else put them away), because they’re often an endless source of reassurance for sufferers.
  • Find the positives in having OCD. I know I lost at least a few of you just now, but before you go, hear me out! I believe—I truly believe—that having OCD has been a positive factor in my everyday life. This, obviously, isn’t something I could’ve said when I was at my lowest point, but now that I’m in recovery I’m able to see how it’s positively impacted me. It’s made me stronger than I could’ve possibly imagined. My symptoms suck, but they’re ultimately reflections of some incredibly deeply held values. Meanwhile, the brain that sometimes churns out this mental flotsam is the same brain that makes me, me. I’ve never understood the urge to externalize OCD. I have it, but it’s a small part of me. Would I give that up if it meant being a different person? Not on your life.
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Nov14

Tuesday Q&A: Nathalie Maragoni

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Happy Tuesday! Please help me welcome Nathalie Maragoni! Not only is Nathalie an amazing advocate working hard to spread awareness of OCD, she’s also in school so she can become an OCD therapist. This is such important work, and we all know how hard it can be to find a properly trained therapist, so thank you, Nathalie!

When she sent me the answers to my questions, she apologized for how long they are. She said, “My professors make fun of me for writing so much.” But look at these answers! See how well organized they are? And insightful? Nathalie, I know I’m giving you reassurance right now, but you’re just going to have to accept it this time.

Read on for Nathalie’s personal experience with OCD, her advice for teachers and parents, and her words of wisdom for those of us who struggle with OCD ourselves.

When were you diagnosed with OCD? How did you realize you needed help, and know where to turn? 

I was officially diagnosed when I was 11, but my parents first started to notice symptoms when I was just four years old. I learned about germs in preschool, and became terrified of them. My teacher told my mom that I was constantly asking if I could go wash my hands. That was the first sign that something seemed off. At six years old, I was holding my mom’s hand as we were crossing the street. All of a sudden, I wriggled free of my mom’s grasp, only to go all the way back across the street and re-cross it without stepping on any cracks or lines. My mom says I “walked in a serpentine pattern.” My mom, who suspected I had OCD, took me to a therapist. The therapist told her that it was likely that I did have OCD, but she didn’t want to put the diagnosis on me at such a young age.

Age 11 was what I call my “nightmare year.” I had no control of my thoughts. I was plagued with torturous thoughts every moment of every day. My own brain seemed to turn on itself. My hands were covered in bloody cracks from washing, washing, washing. I would do somersaults in the pool until I was dizzy. For some reason, I had to do 60 somersaults—no more, no less. Then, intrusive images of my mom dying flooded my mind. I remember sitting in class and getting hit with images of her being carried away in an ambulance; she was bloody and still. I remember panicking and doing rituals to try to “stop” the thought from coming true. I honestly believed that my mom’s life was dependent on my behaviors. If I got an intrusive thought, I had to do a certain ritual to “cancel it out.” I didn’t know why, but it felt necessary. It felt like my mom’s life was in my hands.

During that same year, I became terrified of my own saliva. I refused to swallow my spit, and would hold it in my mouth all day. I walked around school with my cheeks full of spit. It looked like I had just filled my mouth with liquid that I hadn’t yet swallowed, except I stayed like that all day. I couldn’t talk (because the spit would drip out). Sometimes, I would find a drinking fountain to spit in to. Eventually, when my mouth got too full, I started spitting into my clothes. I walked around with a saliva-soaked jacket. I didn’t believe I had a choice in the matter—I honestly thought that my saliva was contaminated.

Food was also “contaminated.” I used to spit out mouthfuls of chewed food in front of my friends. I didn’t have the energy to care what my peers thought of me. At 11 years old, I dropped down to 68 pounds. I looked so sick.

I also worried that everyone in the world would disappear except for me. I got the intrusive thought that everyone was a ghost, and I was the only real person alive. I worried about the number 8. The number 8 meant that I would become pregnant, so I was forbidden to “land” on the number 8 during rituals. I also developed a massive fear of becoming possessed.

This was all during my sixth grade year. I wasn’t learning anything. My teacher said I would just stare at the ceiling all day (she didn’t know that I was really counting the holes in the acoustic ceiling tiles). No one knew how to help me. My teachers didn’t know what to do with me. They didn’t understand what was going on.

Every morning, I would just cry. The thoughts would hit me like a ton of bricks right when I woke up. I would beg my mom to let me stay home. Going to school was exhausting and painful for me. Every task was hard. I felt like I was drowning. I remember lying in my bed one morning and saying, “Mom, I feel like I’m stuck in a nightmare and I can’t wake up.”

I had no idea that I needed help. I didn’t know that my mind worked differently than everyone else’s. I had experienced intrusive thoughts since age four—they were my “normal.” All I knew was that I had scary thoughts all the time, and I felt the need to do certain behaviors to keep those thoughts from coming true. Thankfully, my parents knew something was really wrong, and my mom started researching treatment for OCD. She found the OCD treatment center at UCLA. They had a long waiting list, so she agreed to put me in a research study at UCLA. I was diagnosed with OCD and was finally connected with an OCD specialist who treated my symptoms with exposure with response prevention (ERP).

You’ve written some clear, informative posts about OCD. One of my favorites is How to Help a Student with Obsessive-Compulsive Disorder, because it’s so important that all authority figures in a child’s life are well versed in the disorder. Do you have advice for parents on how to properly communicate their child’s needs to educators?

I think the biggest piece that is so often missing is education about OCD. As we know, OCD is highly stigmatized and portrayed as a funny, quirky disorder where things have to be neat, clean, and orderly. With this being the mindset of so many, it’s not surprising that the severity of OCD oftentimes goes unnoticed. Unfortunately, there are so many children in school who are suffering and aren’t receiving the proper support.

This being said, I think the best place for parents to start is by providing the educators with resources that will teach them about what OCD is and what OCD isn’t. I suggest that parents set up a meeting with their child’s teachers/principal. Explain what OCD is, explain the specific ways that it affects your child (i.e., is your child afraid of germs? How does their OCD specifically manifest itself at school?), and be very clear about what the school can do to best help your child best. If the educators simply know that your child has OCD, but they don’t know how or what they can do to help, not much is going to be accomplished, even when there are good intentions for change.

I suggest creating an “OCD cheat sheet/resource” page that consists of a few links to websites that provide solid education about OCD. I would specifically recommend providing the link to the Child Mind Institute’s article titled “Teacher’s Guide to OCD in the Classroom,” as it does a great job at clearly explaining common obsessions and behaviors seen in children with OCD, as well as giving practical advice regarding how to best help students with OCD in the classroom setting. Remember: you are your child’s biggest advocate. Educating your child’s teachers is key. We can’t expect change to happen when there is an absence of understanding in regards to OCD.

Imagine a person says, “I know I’m not supposed to offer reassurance to [my child, my friend, my student with OCD], but it’s so hard.” How would you respond?

First, I would try to normalize the desire to provide reassurance. As caring human beings, it’s absolutely normal to want to make our loved ones feel better. The tricky thing about providing reassurance is that it actually does provide temporary relief. When we see a loved one struggling, whether it is a child, friend, or student, and we know that we could say something to make them feel better, it’s absolutely normal to want to give that reassurance.

However, that’s where education about how OCD works comes in. In the long run, reassurance only serves to fuel the OCD cycle. Knowing and truly understanding this makes all the difference. It’s so normal for family and friends to feel helpless because they see their loved ones struggling with these intrusive thoughts and they don’t know how to fix it. Especially for parents, I can only imagine how strong the desire must be to take this struggle away from your child. But, as counterintuitive as it seems, withholding reassurance is actually what will make us better in the long run.

I am by no means suggesting that it’s a good idea to stop providing reassurance to someone with OCD cold turkey, because it’s not. It’s so important for family members to be as involved in the treatment process as possible. Together, with the help and guidance of an OCD specialist, a plan that the entire family agrees upon and is on board with can be developed. It’s important for everyone involved to be on the same page and agree upon a plan together. Don’t leave the person with OCD in the dark.

As someone who personally struggles with OCD, I can honestly tell you how thankful I am for the people in my life who resist giving me the reassurance I beg for, because they are ultimately the ones who are helping me in my journey toward recovery. To have family and friends who remind me that it’s OK to be uncomfortable and it’s ok to rush toward things that scare me is powerful.

What do you consider the biggest misconception about OCD?

Ah, there are so many! The biggest misconception that I’ve noticed is the myth that OCD is all about being clean and orderly. While OCD can take this form, there are so many other themes that don’t get nearly as much attention. Personally, I struggle with the more taboo topics, which are the sexual, violent, and blasphemous thoughts. These taboo themes are just as common as contamination OCD, but they are simply not talked about as much because it is so scary to speak up about these topics. That’s why it’s so important for our society to stop stigmatizing OCD. Just because someone likes their desk a certain way or enjoys organizing and being clean does not mean they have OCD. In fact, if they enjoy it, that’s a pretty good indication that it’s not OCD. Real OCD is not quirky or cute, and it’s definitely not enjoyable. It’s a very serious, debilitating disorder that is absolutely torturous.

Last month, during OCD Awareness Week, you hosted an educational event at your school. What was the feedback like? Did you get the feeling attendees learned something new about OCD?

Ah, that night was a dream and the feedback was incredibly humbling. I think the statement that I heard the most was “Wow, I learned so much.” Because the media so often trivializes OCD, the main focus of our event was to highlight the themes of OCD that oftentimes go unrecognized and to communicate just how debilitating this disorder actually is. You don’t often hear people talk about the fear of turning gay, the fear of being possessed, or the fear of killing yourself. I think the content of the discussion was what really grabbed people’s attention. Chrissie, Kerry, April and I wanted to specifically talk about the stuff that many individuals with OCD are struggling with, but are afraid to speak up about.

We also really emphasized the importance of treating OCD with ERP, which is something of which many people in the audience were unaware. The audience consisted of many people in the mental health field, and I think that talking about how important it is to treat OCD with ERP was a huge breakthrough for the audience. They got to learn that OCD really does require a specific treatment. Just because someone is a licensed therapist does not mean that they’re the best person to treat your OCD.

Overall, our goals were: (1) to raise awareness about OCD for the general public and for people in the mental health field, (2) to reach anyone who might be suffering in silence with OCD and to encourage them to get connected to the proper treatment, and (3) to remind everyone that there is hope and there is help available for OCD, and that it is absolutely possible to live a fully functioning life with OCD.

I think we accomplished all of those goals. It was so humbling to have the opportunity to be a part of an experience that advocated for mental health awareness. To know that my story and my suffering is not in vain—that it can be used as a means of helping other people feel less alone—was an absolute honor and privilege that left me feeling humbled and thankful. I can’t wait for future events!

Not only do you have OCD, you’re currently in school so you can one day treat OCD! How did you decide to make this your focus?

So, my symptoms started at age four. I struggled with these awful thoughts for seven years before my parents could finally find a therapist who treated OCD. They couldn’t find an OCD specialist within an hour and a half of our town. It was ridiculous! To this day, 13 years later, it is still so challenging to find effective treatment for OCD in my town. So, I decided that something needed to change, and I had the potential to be a small part of that change.

Once I received my diagnosis and I started understanding more about OCD, I realized that it was my passion to help other people who were similarly struggling. I have always been a great listener and a people-lover, so being a therapist seemed like the best job in the world. I made up my mind to be a therapist years ago, and it has always felt so right. I get excited every time I remember that this is what I get to do for a living.

It wasn’t until recently that I realized the depth of misunderstanding that surrounds OCD. There is such a lack of knowledge about OCD, even among licensed professionals, and it honestly terrifies me to my core. I realized that I wanted to specialize specifically in OCD and anxiety-related disorders. I’ve personally had a horrible experience with a therapist (who was not using ERP to treat my OCD—red flag #1), who actually suggested that one of my intrusive thoughts might be real. It wrecked me. It made me realize how much damage a therapist can do when they try to treat a disorder they don’t really understand, especially in regards to the sexual, violent, and blasphemous themes of OCD.

I want to be that safe place for people who are struggling, and I want to be able to help spread awareness about OCD to other professionals in the mental health field. It takes an average of 9 years for an individual to be diagnosed with OCD. That’s a ridiculous amount of time to go undiagnosed with such a tormenting disorder. To be able to be a mental health professional who can advocate for treating and diagnosing OCD properly would be so fulfilling. I’m going to have the best job in the world.

What advice do you have for someone who doesn’t live near a qualified therapist, or who can’t afford treatment?

That’s a great question! Unfortunately, therapists who are qualified to treat OCD can be hard to find. I would absolutely suggest Skype therapy. Nowadays, there are multiple therapists who are willing to provide treatment across state and country lines. I personally live in California, and my therapist lives in New York. I Skype her once a week from the comfort of my bedroom, and it’s just as effective. I don’t have to travel, I pay the same amount, and I’m getting the correct treatment for my OCD. Check out this great resource for ERP via Skype. If you need help finding a qualified therapist in your area in general, I would recommend contacting Chrissie Hodges for referrals and resources.

Not being able to afford effective treatment is a whole other struggle, and it’s a pretty common one, at that! What I would first suggest is to view your OCD for what it is—a medical disorder that deserves treatment. Getting treatment for your OCD is just as important as treating cancer or diabetes. When finances are tight, I think that a lot of people put their mental health on the back burner. It’s really easy to feel guilty about spending money on therapy when you’re barely able to pay your bills that month.

But, I would challenge you to try to think about your mental health in a different light. OCD is a medical condition that is just as serious as any other physical illness, and it should be treated as such. It shouldn’t be something that is pushed to the back burner.

Your mental health has the potential to affect every other aspect of your life—your relationships, your friendships, your life as a spouse or a parent, etc. When your mental health suffers, everything else can, too. If you had a thyroid disorder, would you make paying for the medication that you need to regulate your hormones your last priority? No. Because your thyroid is a medical issue that deserves the proper treatment. Your brain is no different.

That being said, I also understand that there are many individuals for whom therapy isn’t an option (for a variety of reasons). If this is the case, there are so many great self-help books out there for OCD—I’ve linked a few!

Books for parents of a child with OCD:

If you could share just one piece of advice with others with OCD, what would it be?

Find a few other people who have OCD to support you along your journey. OCD can feel so isolating and lonely, so it’s important to make sure you have support. Whether it is through peer support, an OCD support group in your city, or an online support group, it’s so valuable to have a few people in your life who simply get you and get how your mind works. It’s especially helpful to find people who struggle with your same OCD theme. You can have the most supportive family and friends in the world, and they can be so intentional about educating themselves about OCD (and that’s wonderful if you have that support), but there’s just something about having those few close friends who also have OCD. There is so much power and freedom in not having to explain how your mind works. Get connected to those people who, when you’re struggling, can look at you and simply say, “Me, too. I get it. I’ve been there. You are not alone. There is hope.” Having that support makes all the difference in the world.

Aug8

Tuesday Q&A: Michele Carroll

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MicheleHeadShotMeet the lovely Michele Carroll! Some of you may be thinking, “Wait, I think I have met her” because you’ve talked with her or seen her at some of the annual International OCD Foundation (IOCDF) conferences. As you’ll soon hear from Michele herself, she’s had OCD for years—but she’s only recently begun opening up about it more and sharing her experience with people beyond her close friends and family members. Let’s give her a very warm welcome!

How long have you had OCD? Many people—including myself—say it took years and years to be diagnosed, and it can take years to get the proper treatment as well.  What was your experience like?

I began experiencing OCD symptoms at age 10, but it didn’t develop into full-blown OCD until I had my daughter, 19 years later. Currently, I’ve had OCD for 18 years; it took me 13 years to get treatment.

The first symptom of OCD that I recall occurred when I was in fifth grade. At that time, I rewrote my social studies notebook from beginning to end because I thought it wasn’t neat enough and because I feared failing the exam. Looking back, this didn’t make much sense because I was a straight A student, so it would have been very unlikely for me to fail, even if I didn’t rewrite my notebook. In high school, I began to experience taboo intrusive thoughts, although I didn’t know it was OCD at the time. These thoughts started as scrupulous and blasphemous in nature and changed through the years to other taboo topics. No matter the topic, I was terrified of the thoughts because of what they could mean about me. I would engage in compulsions including praying a certain set of prayers in a certain order, doing the sign of the cross correctly to ensure my prayers were “going to God” and not the devil, seeking reassurance from others, questioning the meaning of the thoughts, analyzing them, trying to figure them out, and researching them on the internet. After I engaged in what I later learned were compulsions, my fear would temporarily decrease. The problem is that the cycle would start all over again, resulting in me engaging in the very same compulsions.

Years passed with this struggle. I eventually serendipitously saw a television program that was about postpartum OCD. On the show, the moderator said that doctors were prescribing antidepressants for this problem. Since this sounded a lot like what I was experiencing, I decided to tell my doctor that I was feeling depressed (so that he would prescribe an SSRI). I figured if I said that, I’d get the medicine without having to speak about the scary thoughts I’d been having. I thought I would get better, and the thoughts would go away.

Of course, avoiding talking about the thoughts, trying to suppress them, and engaging in compulsions didn’t make them stop. Eventually, five years ago, when seeing a psychiatrist who was not an OCD specialist, I finally worked up the courage to speak about the thoughts I’d been having. Regretfully, my doctor didn’t seem to understand, and he shared that he didn’t think I had OCD “because you don’t have any compulsions.” By then, I had read about taboo intrusive thoughts and mental compulsions online. I wanted to get help and get better, and I learned about the IOCDF. Through this group, I got connected with an OCD therapist who did exposure and response prevention (ERP). My recovery journey had begun!

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Once you did realize it was OCD, how did you tell your loved ones?

I have told my loved ones about my OCD gradually and on an individual basis. I first told my husband who had been experiencing these issues with me all along. Next, I told two friends who are psychologists because I felt they could “handle” the information. Since I have what has been coined “pure O,” I referred them to the IOCDF website for more information if they had any questions. Some time went by until I then told my mom, also referring her to the website. Telling other people with whom I’m close has happened gradually. But lately, I’ve talked more about OCD on my Facebook page, and now I’m sharing my story on your blog!

You’ve struggled with scrupulosity, or blasphemous intrusive thoughts. What are some of your common obsessions and compulsions?

I have struggled on and off with blasphemous intrusive thoughts, as the intrusive thoughts that I experience seem to hop around like the “Whack-A-Mole” game. When I seem to “conquer” one type of scary thought, the content changes to something else that I find equally scary. But, as the experts say, the content doesn’t matter in OCD; it’s still OCD.

I tend to experience blasphemous intrusive thoughts when I’m about to receive Communion in church. At that time, a scary thought about my love or lack of love for God will pop into my head.  In the past, I would pray a certain way to make the thoughts go away. However, through ERP, I have learned to not respond to the thoughts. I learned to treat the intrusive thoughts like any other random thought I experience, not as more important. Additionally, I will sometimes think to myself, “This is my OCD” or “Good one, OCD. Really clever.”

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A couple years ago you faced what many Catholics with religious obsessions might consider a trigger: visiting the Vatican! Were you nervous about going and experiencing unwanted thoughts in a sacred place? How did it go?

Yes! I was nervous about several different things. In addition to feeling like I’d probably experience intrusive thoughts, I was concerned about the safety of being out of the country with my children and the safety of flying. My brain can create lots of reasons for me to feel anxious! However, even though I was anxious, this was an event I didn’t want to miss. My daughter was going to be singing with her school choir for Pope Francis in the New Year’s Day Mass! This was, what I considered, a once-in-a-lifetime experience.

I coped with this by accepting that I might experience intrusive thoughts while in St. Peter’s. Since this was uncertain, and because my OCD tends to throw things at me that are particularly important to me, I realized that I might experience blasphemous thoughts while there. As it turns out, I’m so grateful I went and didn’t allow my OCD to stop me from going! When we were in an auditorium where Pope Francis was to appear, the Pope literally walked across the aisle and shook my younger daughter’s hand! And I touched him! This was (without a doubt) one of the most exciting moments in my life.

In day-to-day life—you know, not the Vatican—how do you approach your intrusive thoughts without turning to compulsions? And what do you do if you realize you are engaging in compulsions?

Usually, I deal with my intrusive thoughts by telling myself, “That’s my OCD.” If I’m not sure if a thought is OCD or not, I may get stuck for a little while. However, I’ve learned to also consider these as OCD thoughts, to make my best guess, and move on, dealing with any consequences later. I also regularly engage in self-care, including mindfulness, yoga, being active at work and home, seeing a therapist, and taking medication.

You’re a therapist, but you don’t treat OCD. How did you decide to become a therapist? Even if you didn’t know you have OCD before you went into practice, do you think dealing with the obsessions had any impact on your decision?

I’m a clinical psychologist, and although I’ve treated a few clients with OCD, it’s not my specialty. I completed my doctoral degree prior to developing OCD, so I didn’t become a psychologist because I had OCD. When I was in high school, I helped in the guidance counselors’ office during my senior year. At the time, I was experiencing some symptoms of OCD, but it wasn’t diagnosed. One day, while trying to figure out what field to go into, I told one of the guidance counselors I thought I might do what they do for a living. She laughed and told me to become a clinical psychologist. So, that’s what I did!

Since I was already a licensed psychologist by the time I was diagnosed, if anything, this may have made it more difficult to seek help. I experienced a lot of shame and self-stigma because I thought since I was a psychologist, I “should know” how to make this stop and get better. I was afraid at that time that if people found out, it could hurt my career. I feel differently about that now, but every now and then, that old fear will resurface.

I love the idea that therapists understand mental illness, in one form or another, from a personal perspective. But others may say they want their therapists to be “perfect.” Have you faced any stigma being a therapist with a disorder?

I have experienced more self-stigma than stigma directly from others. I have struggled with the thought that I shouldn’t have a disorder, should know how to stop it, and shouldn’t need help. On a few occasions, I have shared with clients or students that I have OCD. My main reasons for doing this have been to help them feel less shame, to let them know they’re not alone, and to encourage them to stick with treatment. Also, I have briefly shared my condition with interns or post-doctoral fellows because, as part of their training to become psychologists, I believe that self-care is vital. I hope to normalize them getting help if they ever need it. In general, when I have shared parts of my story with others, I have felt respected. As a side note, I’ve sought supervision from respected colleagues at times, such as when I’ve felt triggered. I try to be mindful about maintaining a healthy boundary between my personal struggle and the struggles of others.

If you could share just one piece of advice with others with OCD, what would it be?

You are not alone and it’s not your fault. Get treatment so you can live the life you desire. But most of all, be brave.

Jul18

Tuesday Q&A: Erin Venker

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11251846_780769322049276_936520711750468242_nFunny story: Erin Venker lives right here in the Twin Cities and she’s good friends with one of my coworkers, but we didn’t meet until we both attended the 2015 OCD conference in Boston. I knew right away I wanted to connect with her back home, and I ended up asking her to be the vice president of OCD Twin Cities, the local International OCD Foundation affiliate of which I’m president. (Okay, yes, I’ve said this about a hundred times before, but the conference is an incredible way to connect with like-minded people.) Not only does Erin have OCD, she went to graduate school to treat it and is ready to take clients. Call me biased (I’m not, though), but Erin is funny and compassionate and really knows her stuff.

How long have you had OCD? And when did you first realize what you’d been going through might be OCD?

I first had symptoms in 5th grade but I wasn’t officially diagnosed until 7th grade. I was too embarrassed to talk about my intrusive thoughts, so I didn’t realize that was a part of my OCD until years later.

What were your symptoms? 

In the beginning, my OCD was mostly rituals of “breathing in” and “swallowing on” the letter A so I would get A’s in my classes. I also did a lot of magical thinking, for example, having lucky and unlucky colors. It soon evolved to include repetitive praying and confessing to my mom thoughts, worries, and “bad” things I did, or else I believed something bad would happen. I frequently had horrible intrusive thoughts, both sexual and violent. That period of my life is fuzzy; I just remember it was extremely painful. Daily life was exhausting. I thought I was a horrible person and was in constant fear that something bad was going to happen to my family.

What do you think about the phrase “pure O”? Some therapists and people with OCD think it’s misleading because people with pure O do have compulsions—it’s just that they’re usually mental, not physical. Is there any benefit to the label anyway?

I’m still on the fence with this. In college and post-college, my OCD evolved into primarily mental symptoms with rumination, trying to“figure things out” by replaying scenarios over and over in my head, a constant fear of offending people, and reassurance seeking.

Even though I do believe there are compulsions with pure O, I think many people relate more to the term pure O. I’ve talked to several individuals who have obvious obsessional symptoms of OCD, but they do not recognize their compulsive behaviors. They do not believe they have OCD without the compulsive aspect and therefore do not seek treatment. This can be extremely distressing for individuals, especially those with pedophilic, gay, sexual, and violent intrusive thoughts. They feel there is no explanation for what they are going through. They may fear they are actually a “pervert” or want to kill someone, etc. The general population also still sees OCD as an anxiety disorder that just consists of handwashing and being ultra-organized (which I am not…). Hopefully the term pure O will lead to more awareness of the other aspects of OCD.

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Erin’s kitten, Kitty!

Once you knew you had OCD, how did you go about treating it? How long did it take before you began to feel some relief?

I did not receive the proper treatment for OCD until 14 years after I was first diagnosed. Before exposure and response prevention (ERP) therapy, I saw several talk therapists, but found little relief. When I was 28,  I saw Dr. Chris Donahue in Saint Paul. He made exposure scripts during each session, and I would listen to them as much as possible. It was about two months into treatment when I really began to notice a difference in my thought process and feel a huge weight lift.

You’ve used mindfulness to deal with some of your intrusive thoughts. How does it work? Does it work best in conjunction with therapeutic techniques such as cognitive-behavioral therapy and medication?

The first thing I want to do when I have an intrusive thought is to judge the thought and judge myself. Why am I thinking this? This is so perverted. Why is this happening to me? Just stop thinking. I can’t stop thinking about this thought. I cannot stop ruminating about what happened. This leads down a rabbit hole of shame and negative self-talk. I use mindfulness to separate myself from my thoughts. I imagine thoughts as orbs floating and I observe them. I notice my anxiety and accept that it’s there. Sometimes I imagine myself on a diving board looking into a pool. I see my thoughts, and accept that they are there, without diving into the swamp. Imagery and acceptance has been a crucial component of my treatment.

Mindfulness is definitely best used with cognitive-behavorial therapy (CBT) as you begin to recognize the cognitive distortions in your thoughts. Am I catastrophizing this scenario that I have repeating in my head for the past three hours? Is this black and white thinking? Where can I see the gray in this situation?

I have a complicated relationship with medication. I do believe it can be essential in helping people with OCD, but I believe ERP is the silver bullet. Like ERP, it took years before I found a medication combination that worked for me. My hope is that medication will be prescribed more slowly and methodically while encouraging it to be taken in conjunction to therapy. Like with ERP and finding a therapist, do your research on medication and finding a physician’s assistant or psychiatrist who is thorough and understands OCD.

What has been the most difficult part of having OCD? 

It’s exhausting physically, mentally, and emotionally. In the heat of the battle, it feels as if you never get a break.

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You’ve recently graduated with your master’s in counseling—congratulations! You plan on specializing in OCD, using both ERP and dialectical behavior therapy (DBT), which is a more recent mode of treatment for individuals with OCD. Can you explain what it entails?

Thank you! I was very fortunate to work at the Minnesota Center for Psychology in Saint Paul for over two years as a receptionist. They run excellent DBT programs, and I learned a great deal about DBT while working there. DBT has four modules: emotion regulation, interpersonal effectiveness, mindfulness, and distress tolerance.

The primary concept I use in OCD treatment is being in the present moment, noticing your thoughts and feelings without reacting or judging. ERP therapy is all about feeling and accepting your anxiety until the distress naturally decreases without distracting yourself or resorting to a safety behavior.

I encourage clients to “urge surf” when they are tempted to perform a compulsion or ritual. This is a mindfulness technique used in DBT. I tell clients when they have an urge to ritualize, ride out that urge, notice where the anxiety goes, and imagine surfing to the shore as the urge decreases. We want clients to break the cycle of using compulsions and rituals to lower their distress, and instead ride through the discomfort. OCD is also accompanied by general anxiety, so I utilize the self-care aspects of DBT, but not for during exposures.

You’ve also decided not to require that your clients have insurance, and you’re going to charge on a sliding fee scale. Why? 

Due to the rising costs of health care, insurance benefits have increasingly become more complex. Self-pay ensures that the client’s records and diagnoses are entirely confidential documents, as I will not have to submit them to insurance or a third-party payer. The content of sessions stays between myself, the client, and my supervisor, Dr. Vernon Devine, who has more than 46 years experience treating individuals with anxiety disorders.

Due to the nature of exposure therapy, treatment often involves appointments that need to be longer than an hour, multiple sessions a week, at-home sessions, and public exposures. Self-pay allows for treatment freedom as well as the time to get to the root of the problems the client is facing. It makes treatment much more effective. Typically treatment lasts no longer than three months before going to an as-needed appointment basis.

For individuals who are adamant about using insurance, I am happy to refer them to other therapists and give some general guidance for seeking treatment.

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If you could offer just one piece of advice to others with OCD, what would it be?

Be sure you get a therapist who is well versed in ERP. A therapist should help you create a hierarchy to confront your fears and anxiety and not be afraid to challenge you. A therapist does not need to have a PhD or PsyD to be qualified. Several therapists who are MA, LPCC, or LICSW are excellent at treating OCD.

Also, find a support network. If you’re here in the Twin Cities area, join the OCD Twin Cities book club or a support group, and if you’re not, look into support groups and International OCD Foundation (IOCDF) affiliates in your area. I am working on starting an OCD therapy group. Look at the IOCDF website. Read books about OCD and educate yourself. Talking to people who understand and realizing how closely your symptoms relate to others can be a huge step in recovery.

OCD is a misunderstood and extremely painful disorder. However, I have found people with OCD are some of the strongest, most intelligent, and creative individuals. We feel emotions deeply and are highly sensitive. There is a way to harness strength in your OCD and embrace the uncertainty of life.

Jun27

Tuesday Q&A: Catherine Benfield

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Happy Tuesday! Please welcome Catherine Benfield, OCD warrior and creator of Olivia, a rather adorable cartoon representation of Catherine’s obsessions. Olivia has been making the rounds on social media and regular media, so she may look familiar — but even if she doesn’t, you’re about to learn all about her, and you may even feel inspired to dream up your own “OCD as an annoying but not exactly terrifying” character. I just love Catherine’s outlook on OCD and appreciate her candor, so I’ll let her take over now!

How long have you had OCD, and how did you first realize what you were experiencing might be OCD?

I’ve had OCD for as long as I can remember. As a child, I was terrified of harm coming to my loved ones and compulsions took up a lot of my time. I checked taps, switches, plug sockets, window latches, basically everything and anything. I also had to repeat things until they felt just right and at times it was very difficult for me to lead a normal life.

I saw a few things on the media about OCD during my late teens so realized that that was probably what I had, but in true anxiety style I was too ashamed and frightened to tell anyone.

This theme of OCD — of checking everything — stayed with me to varying degrees until my early 30s, with whole years of being much, much better in between where I managed to hold down a successful teaching career, get married, and begin the extension of my family.

In 2012, I had my son, and about five days after that, my checking OCD returned in force. This was shortly followed by what I now know is postnatal OCD and I became very poorly. I didn’t know what it was at the time, and what ensued was, without doubt, the hardest and most frightening time in my history of living with OCD. I became convinced that I was going to harm my son or worse. My story gets a little heavy here but I want to be totally honest and get this out there so people know that they are not alone, and that it’s important to talk about it. My postnatal OCD caused me to have graphic, detailed images of me hurting or killing my little boy every minute of every day. Obsessions, in general, can be based on thoughts, images, and urges and in this case, I experienced all three. The thing that terrified me the most was the urges. I now know that most new parents get have the odd urge to hurt their children, it’s just what the brain does, it’s all a bit random, but the difference with me was that whilst many people could brush them off as meaningless, my OCD kept replaying them because it wanted me to be certain that I wouldn’t do it. Ultimately, my OCD kept up until it had convinced me I was capable of harming my son. I hit crisis point and went to my doctor to beg him to take me away from my child for his own safety. That didn’t happen obviously and I received medication. I still had no idea that I had postnatal OCD.

I went through a few months of misunderstandings and misdiagnoses before eventually I wondered if what I was experiencing could be related to the checking OCD I had. I keyed it into Google and found a world of stories just like mine and that’s where my recovery began. Accepting that I was the one who found out what was going on with me, and that I initially flew under the radar and didn’t get adequate help for a while, has been part of my recovery process. My medical team were amazing professionals, they just hadn’t been trained in all the ways OCD can present itself. Amazingly, only a few years later, I am seeing so many developments taking place in this field. It’s fantastic to see.

Although not very nice, this time of my life was what got me actually looking for help and treatment; it helped me to accept that I needed to work hard to overcome the condition. Without hitting rock bottom, I’d still be wondering around checking everything all the time. So, the positives aren’t lost on me!

Once you knew it was OCD, what steps did you take? 

Once I realized that I had postnatal OCD I went straight onto medication. I was desperate to stop the thoughts, images, and urges from circling like vultures and they bought me some much-needed relief.

I hadn’t read much about how to recover from postnatal OCD because I was worried it would make it worse or give me creative suggestions for my next obsession — classic OCD talk! So, for a while the only way it got treated was with medication. It became clear that that wasn’t enough when I relapsed straight after coming off them, so I self-referred to CBT therapy.

I spent twenty weeks with the most amazing therapist, and boy did she work me hard! We worked a lot on negative thinking styles, and thought challenging. I also live with generalized anxiety disorder and depression so we had to address some of those issues before I was ready to move onto the exposure and response prevention (ERP) work. I lost my parents shortly after finishing my first lot of therapy and relapsed, so I went back for another twenty sessions where we readdressed some issues and worked on bereavement. I came out of those sessions a new woman.

I made sure I always completed my homework from therapy sessions too. I read everything I could about OCD, self-care, and mindfulness and I started implementing what I’d learned into my life. I did exposure work… I stood, holding my little boy in my arms, by the side of the road, on a bridge, at the top of an escalator, and on a train platform, whilst holding a carving knife, as a way of exposing myself to the fears that consumed me and I gradually started to see a shift in my thinking and sense of well-being.

I told one non-medical person, my husband and absolute rock. I’ve always told him everything. He was worried, as anyone would be, but learned as much as he could about the condition and supported me the whole way through without falter. As for everyone else?  I couldn’t bring myself to tell them. I couldn’t even imagine how that conversation would go. I thought once it “got out” everyone would be concerned about my child’s welfare and I wanted to stop them taking him away from me. Fear was still stopping me make helpful decisions.

A couple of years later I decided to begin telling people. I felt like I was living a lie and wanted to be open about my OCD. I told my close family and friends,  and once I knew I was going to start prepping for, and ultimately launching, Taming Olivia I told everyone. Not one person was anything other than totally supportive. I’ve had so many mind-blowingly open conversations about mental health since then — it really is incredible.

Can you share some of your more common obsessions and compulsions with us? What techniques have you found most helpful in addressing them?

A new one for me is the well-being of my son. As he’s got older, my OCD has shifted from physical harm to emotional, mental, and psychological harm. I often analyze how certain events may affect him. I trawl through memories or weigh up “evidence” trying to find out for certain that nothing has hurt him in this way. I find myself constantly wanting to ask, “And how did that make you feel?” I have to fight the urge to be too overprotective. Again, I use the strategies I mentioned above. More specifically I have to remind myself of “what I know.” I know there is nothing certain in life — I cannot be 100 percent sure that something hasn’t hurt him in this way. I know that OCD tends to focus on the things that are important to you and my son is definitely that. I challenge my thoughts. I stop myself from performing the compulsions; I don’t ask him all the time how he is feeling. I still struggle to find moderation here, so I look to my husband and friends as an example; it’s a bit like carrying out a survey. I use others to help give me an indication.

My other one is the baby gate at bedtime. I find it such a challenging one to conquer that it’s even got a whole blog written about it. It’s become a bit of a celebrity! I check it and check it in the hope it’s shut, and that my little boy won’t fall through it in the night. I again use what I know of OCD to stop me checking it, and it’s my current exposure work so I’m working up to shutting it and going to bed to “sit with the discomfort.”

I’ve found that treating my own OCD as “other” can be very helpful. You’ve taken that concept to a new level, creating “Olivia,” an impish cartoon character who represents your OCD. How  did you come up with this idea?

They say necessity is the mother of invention and that was very much the case for the development of Olivia. Due to the nature of my intrusive thoughts, my self-esteem had taken a nose-dive and I was looking for a strategy that I could use, alongside the strategies I was already using, to really hammer home the fact that the thoughts didn’t indicate something bad about me — that they weren’t “me.” I’d heard a few people say that their therapists had recommended giving their OCD a name; I tried this for a while but I personally found that it didn’t do enough to externalize the condition for me, so the next step was to extend that idea into a character. Most of my intrusive thoughts take place in image form, particularly the very unsettling ones, so it became the case of using images to help defuse images. It wasn’t really a conscious thing at first; I just started imagining Olivia throughout various daily OCD spikes and it really started to help. As I started seeing results, she became less abstract and developed a form and a personality. Olivia is now very much her own “being.” Every time a new OCD-related situation or theme comes along, I find I can adapt her to the situation, and it helps me appreciate the situation in a new light. I now use her to help me externalize all kinds of obsessions, not just image-based ones.

Physically, Olivia is a cross between an alien and a hare with a few extras thrown in. Her ears are important because they provide a very clear indication of when she is startled. I wanted her to be dramatic because it helped me see how over the top and irrational she — the OCD voice — could be. The arms and legs were vital too and they change depending on her mood. There’s a real vulnerability about hares, those big eyes and twitching noses. They’re not as cute as fluffy bunny rabbits but there’s something athletic and graceful about them. I always think it’s easy to see the raw panic they display, and that matched Olivia’s personality perfectly. (I also think it may stem back to when I watched Watership Down as a kid — if you’ve seen that film you’ll know what I’m talking about!) Finally, to round it all off, she’s a little tatty because she’s been through a lot. Actually, before I go on, I must take this opportunity to thank my husband as he is my honorary resident illustrator and responsible for getting Olivia “world-worthy.” He is a professional artist, which has proven very handy for me (not so much for him! 😊).

I undertook some research to see if anyone else was doing the same thing to help them externalize their conditions and couldn’t find much information. What I did find was very heavily based on using fear to help externalize the condition. People were encouraged to imagine their OCD as a bully that constantly tried to manipulate them into certain thoughts and behaviors. Although I can see how that might work, it wasn’t something I was willing to do. There was enough about OCD that I found frightening already; the last thing I wanted to do was to live my life beside a character straight out of a horror film that required the energy to constantly battle it — so I reversed the idea.

As a teacher and mother to a little boy, I found it more natural to imagine her as a child, and in this particular case, a frightened and vulnerable child. I do my best to try to understand that she is constantly focused on worst-case scenarios and that she kicks off big time if she wants my attention. I try very hard to show her empathy, kindness and compassion; it doesn’t always work, but on the whole, it does. I don’t want to struggle against her… I know from experience that that doesn’t work. The aim had always been to try to accept Olivia in my life. Funnily enough, since beginning this acceptance, I find I spend far less time with her than ever before.

I spoke to a few other people about Olivia and got great feedback, so I decided to make it public in the hope it could help others.

What kind of response have you gotten to Olivia? It seems that people love her!

I’ve had some amazing feedback. I’ve received emails from all over the world telling me how much Olivia is helping people externalize their own conditions. They’re not all OCD related; I’ve heard from people with a range of mental health conditions saying that the concept is the only thing that’s worked for them. Some use Olivia; others create their own. I’ve had people share their own creations with me — it’s brilliant! Some of the characters are deliberately designed to look ridiculous to take the power away from them, and there have been a good few laughs over the results. How amazing is it that people can laugh about an externalization of a condition that has at times tortured them?! It’s so healing! I believe a few psychiatrists are starting to use the idea in their practices. Olivia’s story was picked up by the OCD-UK Compulsive Reading magazine and was in a recent edition.

The absolute best feedback I’ve had have been from parents telling me that the Olivia concept is really starting to help their children who have previously been encouraged to create frightening externalizations. One woman even told me she hears her daughter explaining to her character, in a calm and collected way, about why she (her character) was wrong! I burst into tears when I read that letter!

I was so nervous when I first launched Taming Olivia. I worried people might think it belittled the illness or that I was trying to make a joke out of something painful, but I haven’t heard a single criticism. I’m sure not everyone is a fan but they are, at least, kindly keeping it to themselves.

Your blog, Taming Olivia, is helpful and so fun to read. Imagine someone approaches you and says, “I’d love to start a blog about OCD, but I don’t know where to begin. Can you give me some advice?”

I’d say go for it! Don’t rush; take your time to collect your thoughts. I spent about two months carrying a little notebook around with me and every time I had an idea of a potential blog subject or made an observation about OCD, I’d scribble it down in there. This will give you an indication of the direction you want your blog to go in and have the added bonus of giving you loads of material for when you come to start. This is such an exciting time because you can see everything coming together. Of course, if you don’t want to wait — just go for it. You know what works best for you!

My other piece of advice would be to ultimately do it for you. Of course, you want to help others too, but remember people will benefit from reading your posts anyway. The last thing you want is for it to become an added responsibility or pressure.

Blogging is an amazing way to express your feelings; writing things down forces you to take your time and consider things carefully. I’ve found it very cathartic and great at helping with the recovery process. It also keeps my brain busy and gives me a real sense of achievement.

You stay right on top of Taming Olivia, posting regularly. I admit that I get in ruts, where I start to feel anxious and too overwhelmed to actually do anything. Do you ever encounter writer’s block, and if so, how do you push past it?

The website only launched a few months ago and it’s still very much in the honeymoon phase. I am lucky as I am based at home, so I can do bits and bobs when my little one is at Nursery. I know these circumstances will probably change before long so I’ve been doing quite a bit of promotion to get it off the ground. I wanted it to have a solid base that I could build on when I had less time to give it. I think it will be good to take my foot off the gas pedal a bit because I know how beneficial time away from a screen, social media, and reading and writing about OCD can be. It’s all about moderation.

I do get times where I feel totally overwhelmed and anxious and wonder what on earth I’ve started. I try to be really kind to myself when that happens. I have a few back-up blogs written before I even launched the website and the artwork was pretty much planned, so I’ve been able to use those, which has taken the weight off. I also have blogs planned in my notebook so I’m yet to have the feeling of starting something from scratch.

I’m supposed to be writing a blog about visiting your GP/doctor this week, and I’ve been dragging my feet with it. I know it’s not going to be the easiest one to write and I have a few other things going on this week that need my attention, so I think I’ll either write about something a little lighter or leave it until next week or another time. I naturally put a lot of pressure on myself so I have to actively try to remove it and chill out a bit. If it doesn’t get done this week, it doesn’t matter.

And how do you push through everyday slumps and bumps OCD can cause? 

It all depends on the nature of the slump really. Sometimes I go back to my CBT strategies: identifying and challenging negative and OCD-related thoughts; I might read my positivity journal, or try to concentrate on what I’m grateful for. I might also do some exposure work. Imagining Oliva gets me through many difficult moments because she often helps me nip things in the bud before they have a chance to grow into something more uncomfortable.

I find being productive and keeping busy helpful too, along with concentrating on things I enjoy.

I’ve collected a dizzying amount of strategies over the years and I’ve written them all down on paper so when I’m not feeling great, and my OCD is kicking up, I can refer to it to find helpful suggestions. I write these lists to myself when I’m feeling on top of my condition and they help me for when I’m not handling it so well.

If you could share just one piece of advice with others with OCD, what would it be?

My goodness, there are so many things I want to write about here! For me it would have to be to show yourself absolute love, understanding and compassion. Having OCD can really affect your self-esteem and sense of well-being and it is essential that you go easy on yourself. The nature of your obsessions, or even just the fact you have OCD, can make you feel truly awful so be really kind to yourself. Whether it’s just saying “Okay, that exposure didn’t go all that well, I’ll try again tomorrow” or turning down an invitation to something and deciding to rest instead, just go for it. Write a letter to yourself about how strong you are and what you have achieved so far, and when you feel low read it. If you feel bad about yourself get thought challenging, start a positivity journal that lists some of the things you’ve done during the day and all the awesome things that says about you. Treat yourself, living with OCD can be tough, treat yourself to things you enjoy, or to walks, or some exercise. Engage in self-care, do eat well, do get enough sleep. We don’t have to turn into little models of perfection, but there’s a lot we can do to help us fall in love with ourselves and stay in love with ourselves. Those living with OCD are amongst my absolute favorite people: strong, determined, kind, and compassionate. Make sure you know that about yourself too. You are everything!

Mar28

Tuesday Q&A: Kimberley Quinlan

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KymQuinlanWelcome to Tuesday Q&A! Today I’m hosting the lovely Kimberley Quinlan, who always makes me feel better whenever she shares a post from her site or comments on anything I post about OCD. She’s wise and thoughtful, and I find her Australian accent very calming (but that’s kind of a side note — her content is what matters most!). See for yourself how wonderful she is.

Although you treat more than just OCD, I know you through the OCD community. How did you decide to focus mostly on anxiety disorders, body-focused repetitive disorders, and eating disorders? From my untrained perspective, they seem to share some similarities, such as compulsive behavior.

While I don’t have OCD, I did have anxiety as a child and adolescent and I had significant anxiety and disordered eating issues in my early adulthood. When I started treating OCD, OCD spectrum disorders and body-focused repetitive behaviors (BFRBs) during my internship, I immediately knew “these are my people.” Being with my clients with OCD brings me so much joy. I get to sit with my clients and we can be perfectly imperfect together. We can cry. We can laugh. We can be vulnerable. We can be strong.

What resonates most for me is my clients’ stories about feeling like you “have” to do a compulsive behavior, despite a deep, inner knowing that it was irrational. This experience is so similar to those who have an eating disorder. Both disorders include an obsession that causes significant anxiety and distress, and both include an array of compulsions that are done to prevent the feared obsession from occurring.

I love the posts you publish on your site, particularly your soothing podcasts. Where did you get the idea to share audio posts as well as blog posts? 

I am a native Australian who moved to the USA in 2001, right after September 11. A few years ago, a friend from Australia emailed me stating that she was struggling with severe anxiety and asked if I could help her. I gave her a list of great books on her specific anxiety and some information about mindfulness, but for days after we connected I wished I could be more helpful.

There are lots of great mindfulness resources out there, but so few are specific to anxiety disorders, BFRBs and eating disorders. I quickly decided I would do a podcast for those who have these specific disorders and have little access to resources. I went out and bought a decent microphone, set it up in my kitchen and I just started talking. It is kind of funny now that I think about it. I think I did my first episode in my PJs while my newborn son was napping.

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Your practice is in the Los Angeles area, and of course it’s not the only clinic for individuals with OCD to choose from. What advice do you have for people who don’t live in an urban area or within a comfortable driving distance of a provider? How about for those whose insurance doesn’t cover proper treatment for OCD?

There are some wonderful books and online resources (Yahoo forums, e-books, online classes, etc.) out there for those who cannot access face-to-face treatment. The International OCD Foundation (IOCDF) is a great resource for anyone wanting to get down to business and work on their OCD. If you are doing a Google search for resources in your general area, just make sure it focuses on cognitive behavioral therapy (CBT), exposure and response prevention (ERP) and mindfulness.

There are some great options for teletherapy (online therapy) with trained therapists from your home computer or electronic device, if that is financially possible for you. Check the IOCDF website for therapists who are trained to help you and offer this option in their practice. There are some laws that prohibit out-of-state teletherapy, so check with the health care provider first.

Finding a good CBT therapist who uses ERP and who takes insurance can be very difficult.  If you cannot find a therapist trained in CBT and ERP, please do not give up. My best advice is to find an in-network therapist who you feel comfortable with and direct them to the IOCDF for resources to help them to understand how to help you. Also, as mentioned above, there are some great books and workbooks for OCD using CBT and mindfulness.  Bring the workbooks to therapy and go through them together. Having the support of a therapist (or even a friend or family member) can be super helpful and can help you to identify issues that you aren’t aware of.

What would you tell a client who doesn’t think ERP would work because she doesn’t have compulsions such as repetitive hand washing? 

Overt compulsions (behaviors you can see) are not the only kind of compulsions. This is a big misconception. Hollywood has done a great job at portraying OCD as a disorder where one might perform a lot of hand washing or crack jumping, but it rarely shows the other compulsions that come with OCD. Compulsions also include reassurance seeking, avoidance compulsions and mental compulsions. You can do ERP with any of these compulsions. If you tend do to a lot of reassurance seeking, you could challenge yourself to not ask for reassurance and sit with the uncertainty that something bad will happen. If you tend to do mental compulsions, you could write an imaginal exposure about your obsession coming true and read it many times per day, while allowing the physical discomfort of anxiety. If you tend to do avoidance compulsions, you can work to gradually touch or be around your feared object or thought. I have learned that there is always a way to do ERP, and ERP is essential to your treatment. You just have to get creative!

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Imagine a parent friend of yours says, “My cousin told me she’s worried she might be a pedophile because she has intrusive thoughts about children. Should I forbid her from being around my kids?”

Oh my stars, no! I cannot tell you how many strange and inappropriate thoughts I have had about my children or my family members’ children. If we are honest with ourselves, I think we all have had them, in some shape or form. The hard part is those with OCD tend to give these thoughts way too much value.

My 5-year-old daughter who doesn’t have OCD told me the other day that she had a “scary nightmare about hurting a kid, but it was while we were in the car coming home from school.” She decided to call these thoughts “day-mares” and she thought that was pretty funny. We give those “day-mares” as much value as we give the nightmares we have during our sleep. I love this idea and I talk with my clients about this too.

Unfortunately, our society is widely uneducated on OCD and how to respond to it.  Stopping the cousin from being around kids will only enforce a faulty belief that her thoughts are valuable and, resultantly, make her OCD worse. In this case, I would tell the cousin to allow the thoughts to be there while she is around the kids. Even better would be to practice having the intrusive thoughts as much as she can. In my office, we play a game called “One-up.” During this game, we take turns coming up with the most scariest thoughts. The goal is to “one-up” each other by making the thought just a little bit more bizarre and frightening than the last one. It’s a great way to practice having scary thoughts without giving too much value to them. I always joke with my clients that my office walls have heard it all.

Do you have any advice for a young person who hasn’t yet told his family or friends that he has OCD? Are there good first steps he can take in “coming out” with OCD?

I love Brene Brown’s idea of trusting those who have filled up his or her “marble jar.” She talks about how her daughter’s elementary teacher uses a glass jar and puts in a marble if the kids are behaving well. If they aren’t behaving well, the teacher takes a marble out.  When the jar is full, the teacher has a party for all the kids. Brene Brown uses this metaphor as a way of determining if we can trust someone. If a friend has shown through many incidences that they can be trusted, their metaphorical jar is full of marbles. Those are the people who I would confide in. If that person has been consistent in showing they can be trusted, and you believe their jar has been full for a while, take a leap of faith and try sharing with them.

That being said, I would be prepared for lots of questions. Try not to take their questions as judgment. The person you shared with might not understand entirely. Try to educate them as much as you can, or refer them to some of the great books or websites out there.

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If you could share just one piece of advice with individuals with OCD, what would it be?

In my opinion, overcoming OCD takes two things: Deep desire and hard work. I have seen so many people get better. They come in to my office having spent years struggling and battling OCD. The ones who conquer OCD are the ones who have a deep desire and they go to work. It’s really very inspiring.

When I started working on my own anxiety in my early 20s, I didn’t have a therapist. I would read every book I could find and write extensive notes. I would take long walks while listening to helpful podcasts about the issues I was dealing with. There are lots of people out there who can lead you in the right direction. Remember, deep desire and hard work is all it takes.

Nov8

Tuesday Q&A: Producers of UNSTUCK

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ocd_conToday I’m hosting Chris Baier and Kelly Anderson, the producers of the upcoming documentary UNSTUCK: An OCD Kids Movie as well as incredibly supportive parents to children with OCD. The kids interviewed for the film will inspire you: They’re articulate and honest, and their stories will help spread awareness about OCD, particularly how it affects children. Stay tuned for the film’s release next spring!

Chris, you have a 11-year-old daughter who has OCD, and Kelly, you have a 12-year-old daughter who has OCD. How did you realize your child might have OCD? Were there outward symptoms such as physical or time-consuming compulsions, or did your child approach you about obsessive thoughts, for example?

Chris: My wife and I realized something was wrong when in the span of a few weeks Vanessa changed from a happy-go-lucky kid to extremely anxious and scared. She was 8 at the time and became frightened of things like small pebbles and trees on our street. She was convinced these objects were poison, would cause cancer and kill her. She was panicked all the time so we knew she needed help, but we did not know it was OCD until we talked with a licensed therapist.

Kelly: My daughter is 12 and her OCD presented with some pretty visible and classic symptoms so I knew right away what it was. She is not in the film and I’m letting her figure out how much she wants to share about her OCD these days so I guess I’ll leave it at that! She is doing some drawings that will be animated for the film so she’s participating in that way.

OCD is such a commonly misunderstood disorder. What did you know about OCD before your child was diagnosed?

Chris: I knew about OCD and that it was serious, but I mostly associated it with being scared of germs or getting sick. I had no idea of the tangled web it weaves.

Kelly: I have one friend whose brother has severe OCD so I was somewhat aware, but that’s nothing like confronting a severe case of OCD in your own child or family.

Since you live in New York City, I imagine — and hope — that treatment resources abound. Was this the case, or did it take some trial and error before finding the help your child needed?

Chris: In NYC there are plenty of therapists who say they treat OCD, but not many do exposure and response prevention (ERP). My wife and I had to do a lot of research about the disorder and one of the reasons it took weeks to get my daughter the right therapy was because we had to interview many providers just to make sure they were trained in ERP. There were none in Brooklyn so we had to take Vanessa to lower Manhattan each week. About six months into her OCD therapy we found a free group program at Mt. Sinai Hospital. This program, led by Dr. Ariz Rojas, transformed our lives. However, it meant traveling one hour each way by subway to get our daughter to the nighttime sessions.

Kelly: My daughter was already seeing a therapist for some other issues, and that therapist confirmed that we were indeed dealing with OCD. We did ERP with her for a while, but eventually we decided to take advantage of a free group therapy clinic run by Dr. Ariz Rojas at Mt. Sinai Hospital here in NYC. Dr. Rojas specializes in OCD and her approach to ERP is very aggressive (I mean that in a good way!). We started seeing her privately as well as in the group, and it was tremendously effective in dealing with my daughter’s severe OCD. I would strongly recommend that parents of children with OCD seek out specialized ERP therapy if at all possible, even if it means traveling a distance for initial meetings and then continuing online.

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When one member of a family has OCD it can affect the entire family dynamic. What advice do you have for parents whose children have just been diagnosed, or for those who have been struggling to support their children for an extended period of time?

Chris: OCD totally hijacked our family and figured out ways to manipulate and dominate everyone. As a parent, your first thought is to soothe and accommodate, but that’s the worst thing you can do. My advice for parents is to immediately start educating yourself on what OCD is and how it’s treated. Learning about the disorder became our second job. We read books, joined Yahoo groups, watched videos, joined the IOCDF and talked to a lot of people. We needed to understand as much as we could. Eventually, we started a parent group in Brooklyn because we needed to talk to people who understood what we were going through.

Kelly: Learning how to be dispassionate when doing ERP homework with your child is very important. You need to get used to seeing your child in a lot of distress without losing your cool or over-identifying! I also learned that when I react to my child’s OCD with anxiety, it makes her OCD worse. It can be incredibly hard to stay calm and non-reactive, especially if they taking out their anger on you, but if you get upset it just makes everything worse. Finally, trying to be compassionate instead of getting angry at any OCD behavior is key. I found that a very important and difficult lesson to learn, but it’s made a world of difference.

You met at a support group Chris runs for parents of children with OCD. How did you go from that initial meeting to collaborating on UNSTUCK: An OCD Kids Movie?

Chris: Our kids both attended a weeklong OCD summer camp at Mr. Sinai Hospital. One day Kelly was driving her daughter and Vanessa home. The girls were talking about OCD in a very knowledgeable way and that sparked an idea. Kelly approached me about working together and I’m so happy she did. UNSTUCK is something that I think will help many parents and children.

Kelly: I make films as my profession, and last year I had just finished a big project and was thinking about what to do next. I realized I was spending all my time reading about OCD, and it was hard for me to focus on anything else because it was such a big part of my life! The biggest obstacle standing in the way of making a film about OCD was my discomfort with showing kids going through ERP — I knew from experience that no parent would want the world to see their child in such a vulnerable position, and that the kids wouldn’t feel good about it either. I saw another film, Ellen Bruno’s Split, about kids and divorce, and I really liked the way the kids just talked about their experiences in an interview format. I knew Chris through the support group, and had noticed that he was passionate about connecting families and kids with OCD, and we came up with this idea of “kids as experts on OCD.” It’s been great working together on UNSTUCK: An OCD Kids Movie.

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The children who appear in your film inspire me! It took me years after diagnosis in my late 20s to start talking about OCD, and I still get nervous. Were there any obstacles to finding children who were willing to open up, and parents who were okay with that, too?

Kelly: We are really indebted to several of our advisors who are mental health professionals — in particular Dr. Ariz Rojas at Mt. Sinai Hospital and Dr. Eric Storch at Rogers Hospital. They were willing to approach some families about participating in the film. We found other children through the OCD and Parenting Yahoo group. I am really very thankful to Vanessa and Jake, the first two children we filmed for the trailer. I think they inspired other kids to participate because they were brave and articulate, and potential participants could see how important it is for kids to hear from other kids who know what they are going through.

I think it speaks to a greater level of acceptance of difference in general, and of mental illness and disability in particular, that kids are willing to tell their stories. These kids really want to help others with OCD — it’s amazing to hear them talk about why they want to be in UNSTUCK.

You have an advisory board of professionals — adults — in the field. How much input have you gotten from children with OCD, and what’s been the most surprising, helpful, or enlightening piece of insight they’ve shared?

Chris: We talked with probably 15-20 children and families before picking our cast. Every child we spoke with help us frame our approach. These kids and others in the OCD community really helped inform the discussions we had during filming.

As for what surprised us, collectively two themes stand out. The first is the loneliness each child experienced when OCD was really bad. The second is the bravery each of them showed while learning to fight back. Some children have had to do some drastic things to get control of their lives. We’re in awe of their strength.

UNSTUCK seems like a real labor of love. How does it feel working on a project that’s so personal, and how have you managed to fit it into your schedule?

Chris: Schedule-wise, we set mini deadlines and I think that helped us stay on track even though we never had an official release date. First we wanted to get the trailer finished by winter 2016 so we could start fundraising and spread the word about the film. Then we planned a screening at OCD Con in July, which meant we had to film more children in order to have something to show at the conference. Now we’re focused on finishing by spring 2017 so that we can share it with the world.

Kelly: It’s definitely a labor of love! We also were really fortunate to get some funding from the Kellen Foundation for it, so that has been really helpful. It’s always a challenge to get films made but we are really excited it will be coming out this spring!

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What can my readers do to help make UNSTUCK a reality? 

Chris: It would be great if people joined our mailing list on our site and/or like our Facebook page. This way they get first look at new content and get notified immediately when UNSTUCK is finished.

Kelly: Well, we are still looking for donations. Every dollar will go toward getting the film finished and out into the world. We really want to do a big engagement campaign with it, showing it in festivals, conferences, community organizations, schools, and more.

If you could share just one piece of advice with other parents of children with OCD, what would it be?

Chris: I would say parents and caregivers should understand that they can’t magically fix a child. Kids have to learn the tools themselves. I found that the best thing was to become an advocate and cheerleader for my daughter. So, just find ways to help and support your child so they can focus on therapy.

Kelly: Don’t blame your kid for their OCD even though it makes life miserable for everybody. They are dealing with a tremendously stressful mental illness and they need your love and support. And forgive yourself for the times you act in ways you regret — we are all only human! Do whatever you can to get your child to a cognitive behavioral therapist that specialist in ERP for OCD (the International OCD Foundation website can help you find someone qualified). That really saved our lives.

Oct18

Tuesday Q&A: Mark Joyella

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mental-illness-awareness-181If you know me, you know I believe we all have the power to spread awareness, even if it’s to one other person in our lives, and that every little bit matters. A journalist with nearly 12,000 followers on Twitter, Mark Joyella is in a position to spread awareness far and wide, and we’re lucky enough that he’s willing to! I first heard of him when he wrote a great piece called “Screw stigma: I’m coming out” about his personal experience with OCD, and I’ve since learned he stands up against the stigma and misconceptions surrounding mental illness in general.

As a journalist, you’re in the public eye. And, right or not, people have certain expectations of public figures, so you took what some would consider a risk when you wrote “Screw stigma: I’m coming out.” Why did you decide to disclose that you have OCD? How was the piece received?

I had grown increasingly concerned about the content of news stories and how mental illness was being handled — it felt to me that instead of illuminating the topic, some of the reporting merely reinforced stereotypes. I felt that failing to disclose my own illness —  and refusing to speak out because I didn’t want my illness public — had become an unbearable situation. The reaction was exceptionally positive, and I immediately connected with other journalists who had revealed their mental illness — and others who weren’t ready to do so.

You note in that piece that you were never shy about telling co-workers about your physical symptoms and ailments, and refer to being recognized during a colonoscopy as “a decent anecdote.” But you weren’t willing to talk about your mental illness in the same way. Tell us why.

I think most people look at physical illness as something that happens to you, while mental illness, unfairly, is seen as who a person is — that’s why people with mental illness often feel judged or blamed. There’s also a kind of bond in sharing stories of physical illness — even the awkwardness or unpleasantness of the illness or the treatment — that makes sharing stories an easy thing to do. But with mental illness, there’s no guarantee how you will be received, and no way to know if anyone will identify with what you are experiencing, even though the statistics tell us it’s highly likely in any given workplace there are several people who are in some way touched directly by mental illness.

When were you diagnosed with OCD, and how did you realize what you’d been going through might be OCD?

OCD was first mentioned to me by a therapist as we were working on my struggle to break out of personal isolation — there were tons of fears that kept me inside my home and not living. But because I was able to get to work and even travel extensively on stories, I wasn’t aware of how isolated and afraid I really was.

After you were diagnosed, how did you feel? How did you go about treating your OCD symptoms?

On the one hand, it’s nice to know there’s an explanation for what you’re experiencing, and I liked that. But OCD? Because I don’t have outward compulsions, it was hard to accept at first. But a psychiatrist agreed with the diagnosis, and off I went. I began studying up on the disorder, began taking medicine to treat it, and I began to get better.

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People often ask me how I told my loved ones that I’d been diagnosed with OCD, so I’ll pose the same question to you: Who did you tell, and how?

I didn’t tell anybody at first. The only person outside my doctors who knew was my girlfriend — now my wife — who had struggled with the walls I had put up to protect myself. She had suspected OCD, but I must admit it sounded like a wild idea until the “experts” said, yep, that’s it. The rest of my friends and family learned of my diagnosis when I wrote my story. Probably not the best way to bring it up — but it worked, and I’m sure I would’ve lost endless amounts of sleep trying to prepare for a conversation about it — this way the band-aid came right off and I didn’t have to begin the conversation at all. “I read your story,” people would say, and we would talk about it. For me, that was the easiest way: I threw it out there all at once.

What advice do you have for my readers who want to advocate for OCD awareness but don’t know where to begin? And what if they’re worried how people will perceive them?

I’ve been massively impressed with the ways people advocate for OCD awareness — with small steps and giant efforts. There’s a way to do it for every person. I’ve used social media to call out news stories that I felt were poorly done, and to try and boost the signal for people who have good stories to tell. But sometimes the smallest actions — like seeing a person on Twitter who says they are suffering with the illness, and responding “you’re not alone” can have an impact. Imagine hearing that from a person in a country far away when you really, really needed to hear it.

I admire how open you are on social media, and how willing you are to call people out when they’re being ignorant. I laughed out loud at this one. I’ve been insulted and even sworn at for doing similar things. Have you ever really gotten into it with anyone?

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I’ve had fellow reporters get very defensive when I criticized the words they used in stories (one example: a reference to a person with mental illness “escaping” from a “mental institution.” I wrote: “do you mean a “patient” fleeing a “hospital”? The reporter blamed the law enforcement agency for using the terms, and said he was merely repeating what the “official” information was. I said, you know, you don’t have to repeat stigma-reinforcing language. And people get really offended when you call out OCD jokes. They never meant any harm and they can’t believe you are attacking them for turning OCD into a punchline. But man, I hate those jokes so, so much.

On a broader level, you’ve worked on several pieces addressing how the media reports on mental health in America — for example, it seems that whenever there’s a mass shooting reporters feel comfortable diagnosing the shooter with some mental illness or another. What can reporters do differently — and better?

Reporters can get educated. There are tons of resources — around the world — for journalists to learn more about what mental illness is, how common it is, and how not to fall into the traps of writing stories that are filled with inaccurate assumptions.

If you could share just one piece of advice with others who have OCD, what would it be?

It’s OK to not be OK. Recovery is not a straight line, and I find that great weeks when I push my boundaries and challenge my fears, are often followed by weeks when I need to step back and while it’s tempting to see that as a failure or setback, I think it’s like resting a sore muscle after pushing it hard during training. You don’t just get stronger and stronger. You push, you rest, you get stronger, you push again.

Oct11

Tuesday Q&A: Jonathan Grayson

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14610589_1152487181504817_1808445062_nMaybe you haven’t met Jonathan Grayson in person, and maybe you haven’t read his book — yet. But if you’ve been to the International OCD Conference, you’ve probably seen him leading a huge group of people through the hotel lobby, armed with a bullhorn. Ask a random sampling of these people what their favorite part of the conference was, and they’re likely to say it was this Grayson-led adventure, the mini-version of an OCD camping trip where people take a couple of hours out of their long weekend to face some of their biggest fears.

Of course, as an OCD therapist Dr. Grayson guides people through their biggest fears all year-round, not just once a year at the OCD conference. I’m so honored to share some of his insights here, and I hope you’ll find his advice helpful.

When did you decide to treat OCD specifically? Did you know while you were still in school, or did you decide after you’d been in practice?

The short answer is that I’m working with OCD because I wasn’t able to control my life when I wanted to. Before elaborating, let me give you some background. Before I had ever heard of OCD, in high school, the inherent uncertainty of reality fascinated me. I went through a long period of aggravating almost anyone who spoke to me by ending almost every statement with, “more or less.” “More or less what?” they would question, to which I’d respond, “If it’s more or less, does it matter?” For my college honors thesis, my supervisor commented, “You’ve picked a very ambiguous area as your focus — that’s just like you.”

My circuitous path to OCD began with graduate school. Using the shotgun method of applying (apply to as many schools as you can afford and maybe you’ll have a hit), I had applied to all of the schools that attracted me and was looking for a safety school. With typical East Coast bias, I settled upon the University of Iowa — what could possibly be in the middle of Iowa? Upon getting in, I discovered Iowa was a good school and that’s where I chose to go. If I had known it was good school, I wouldn’t have applied. Going to UI and working primarily with Dr. Tom Borkovec, who is well known in CBT circles, led to me getting an internship at Brown, where I worked with my first OCD patient. This still wasn’t the beginning, the deciding point, of devoting myself to OCD. On my internship, we were allowed to choose our rotations, though all rotations had to be filled. The one rotation I did not want, was the intensive alcohol dependence rotation. I got stuck with it. The basis of the GOAL groups, which played a significant role in my early reputation, came from that rotation. Finally, when looking for a first job, my wife and I decided to stay on the East Coast, but I didn’t want to go back to Philadelphia. The only job I could find was working with Edna Foa on her first OCD grant. At that time, we were the only OCD center in the country and her research on exposure and response prevention (ERP) is the foundation of all treatment today. So my devotion to working with OCD began in 1979 working at Temple University with Dr. Foa. So there were three critical occasions in which had I had control, I would have made decisions that would not lead to my present life. I like to think the alternative life would have been good — maybe or maybe not, I’ll never know. I do know I like this reality and feel so lucky to have a passion for my work. The takeaway: You may not get what you choose in the short run and the path to success is moving forward with whatever happens. Alternative realities/fantasies are perfect, but they because they aren’t real.

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Not only is your book Freedom from Obsessive Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty well rated and well reviewed, it also won the Self Help Book of Merit Award from the Association of Behavioral and Cognitive Therapies. That’s quite an honor! Where did you get the idea for the book?

Thank you for the compliments. It is my heart and soul. I kind of wanted to write a book; I’m opinionated enough to feel and hope that I had something different to offer. However, it wasn’t until I was lucky enough to be approached by an agent about writing a book that it became real. The agent asked if could I write a self-help book about OCD that could be about 300-400 pages long. I had just completed a 25-page document for the OCD Foundation that I felt contained everything I knew about OCD. So, of course, I said yes. I had three goals in writing my book. I wanted to help people understand all of the ins and outs of OCD in a way that made sense. To say, for example, OCD is a neurobiological problem that is related to serotonin availability in the brain may be an explanation, but it is not something that helps the sufferer to understand the experience. I believe that treatment works much better if the sufferer has an explanation that makes both logical and emotional sense; that is, the logic of the explanation should be accompanied by an exclamation of “That’s me!” Freedom from OCD is written exactly the way I speak to sufferers — without the uhs and ums — in hopes it would make sense to sufferers and to give professionals the language to use. The second goal of the book has to do with the twofold problem all self-help books have: Will the reader follow the program outlined in the book and is the program actually doable (and individualized so that it isn’t a mechanical manual)? Hopefully the program I outlined achieved that. As to the original question, where did I get the idea for the book, it was simply the sum of my work with OCD.  I often joke that I only know about 40 minutes of material that is not already in the book.

It’s incredible how much progress has been made in understanding OCD in recent decades. You started the first OCD support group in 1981. Are you surprised by how much awareness has grown since then? What do you attribute it to?

I’m afraid I disagree with the premise of the question. The core of treatment is still the same as what we were doing in the early ’80s; although, it is true we have found a number of ways to augment and facilitate treatment through the use of ideas from acceptance and commitment therapy (ACT) and mindfulness. However, all too often I also see these same techniques and others used incorrectly. In ’80s, I assumed that by the ’90s OCD treatment would be easy to find and available everywhere, that I would be good for supervision, but not part of a small therapy community. Tragically, I still see people who suffer unnecessarily for years, not because they have OCD, but because of therapists who don’t know what they are doing. In their treatment guidelines for OCD, both the American Psychological Association and the American Psychiatric Association agree that ERP is the first line treatment for OCD. There are virtually no OCD experts who disagree, whether their prime focus is upon the psychology or biology of OCD. And yet, it is still hard to find providers who know how to treat OCD, even in major cities. Unfortunately, we have discovered that it is easier to help someone suffering from OCD than it is to change the behavior of mental health professionals.

I know many people who’d love to start a support group but aren’t sure how to go about it, and they may think they need to be therapists or “perfectly” recovered in order to be effective. Do you have any words of encouragement or advice?

The most difficult part of starting a support group are the initial logistics of where to hold the group and how to let the public know that it is available. I don’t think a therapist or “perfectly” recovered person has to run the group for it to be effective. My personal preference is therapist-assisted, meaning the sufferers run the meeting, but a therapist is there to troubleshoot; however, that is my preference, not a rule. The main quality required of the organizer(s) is dedication. There is a GOAL (Giving Obsessive-Compulsives Another Lifestyle) manual available to help people start and run a group. The manual is available in three places: It is included in Freedom from OCD, or it can be downloaded for free from the International OCD Foundation or from FreedomFromOCD.com.

What do you see as the most common misconception about OCD?

I think there are one and a half conceptions. The half is that most non-sufferers don’t realize that the core of almost all OCD problems is intolerance of uncertainty in the sufferer’s problem area — or to put it another way, in the sufferer’s problem area, there is an attempt to be 100% certain, e.g., I want to be 100% sure I’m clean, 100% sure I’m not gay (or straight), 100% sure I didn’t run someone over, and so on. There are two problems with this. First, research has shown us that the only people who are 100% certain are stupid. Since most people with OCD have above average intelligence, we won’t be able to help them be certain. The second problem with certainty is that it is not a fact, but an emotion like anger, joy, and sadness. We may be able to decide how to express an emotion, but not whether or not to have it. Certainty is an emotion that correlates with reality, but not perfectly. Most of the time, my feeling of certainty — terrorists aren’t waiting for me outside of my office; my car isn’t stolen; my wife is alive — turn out to be true. But that doesn’t mean the feeling reflects truth. In this country, I assume that most people on their wedding day feel certain they will be with their new spouse forever. Half of them will be wrong. Certainty is a nice feeling, but it doesn’t mean that you are holding onto a truth.

Failure to recognize intolerance of uncertainty is the half a misconception. The other misconception is the failure of non-sufferers to recognize the agony of having OCD. The reason for this is indirectly the fault of sufferers. For the most part, people with OCD are experts at hiding their symptoms and if they talk about their symptoms, they sound calm.  We have a name for this ability: Competence, the ability to function when stressed as if everything is okay. It is a great skill and I don’t want anyone to get rid of this skill. I do want to help people to not have to rely on it as often as they do. The plus side of the skill is that it allows people to keep functioning and to hold onto careers. The downside is that non-sufferers assume that there is no pain to OCD, that you just do those “weird” things.

My psychiatrist once told me that since many doctors don’t understand what OCD really is, they’d sometimes refer patients who didn’t have an issue with OCD at all. He’d have to tell new patients that they didn’t have OCD, they were just really neat. Have you ever had to “undiagnose” someone with OCD?

I’m afraid the opposite is true. I regularly see OCD sufferers who were told that they didn’t have OCD, because they don’t check or wash their hands. Horribly and amazingly, these practitioners know nothing about pure O and other variations of OCD.

You run an annual OCD camping trip. Tell us about it. Why should someone with OCD attend, and what can they expect?

This question could consume more than a few pages. It has been a few years since I’ve run the weekend camping trip. Every year, at the International OCD Foundation’s conference, I do a mini-version of the trip in which I take 200-300 people through whatever city we are in to do exposure. It is hard to describe the magic. Imagine if I asked you to tell me about your favorite movie in five sentences. I might have an idea of the plot, but wouldn’t really be able to have an emotional feel for it. So let me just say that it is magic. People willingly do things they would never believe possible for themselves, everyone is sharing an intense camaraderie and having fun, and, although no one is likely to be cured in two hours, I have seen many people make a small permanent gain that carries over to the next year’s trip.

If you could give just one piece of advice to someone with OCD, what would it be?

Asking someone like me to give just one piece of advice may be the hardest challenge ever. The most important thing to remember about overcoming and coping with OCD is that the goal is living with uncertainty. It is a scary goal, because it means anything can happen. But it is a condition of humanity that we all live with, even sufferers. In the areas of your lives that are unaffected by OCD, you behave like everyone else. I assume almost everyone reading this does not want to be maimed, paralyzed, and disfigured. Despite this, you get into cars, cabs, and buses where some idiot might ram into you and leave you in a mess. And if this isn’t your problem, you cope with it the “normal” way: You hope you don’t have an accident and your plan is to not cope with it until you’re being crushed under the metal of a crash. Coping with uncertainty means being determined to cope with any outcome, no matter how horrific. Suicide is not an option. Some of you may believe you have situations too horrible to contemplate. Rather than go over them here, let me assure you, we have discussed them all and how to cope with all possibilities. If you doubt me, talk to an OCD expert or read my book. Why would I want to risk living with every possible uncertainty and every possible horrific outcome? Because there is no other choice that will allow joy in your life. In the end, the past is made of nice memories, the future of hopes, and the present is all we really have. We make plans for tomorrow just in case we survive. The result of learning to live with uncertainty is learning to have the joy of the present instead of missing that because you are in OCD land.

Oct4

Tuesday Q&A: Kirsten Pagacz

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13166850_1788791191354710_783429034_nKirsten Pagacz seems to lead a dream life—just browse through some of her photos and you’ll see what I mean. Is that Kirsten with Dick Van Dyke?! There she is at Comic Con, having a blast. And she owns the most charming little store! Her life is pretty good now, but it hasn’t always been that way. Like so many of us with OCD, she suffered in silence and confusion for decades before finally being diagnosed, and that enlightenment was all thanks to chance. I’m excited to meet Kirsten later this week, when she’ll be in town to sign copies of her hot-off-the-presses book, Leaving the OCD Circus: Your Big Ticket Out of Having to Control Every Little Thing.

Like so many other people with OCD, you went undiagnosed for decades. How did you finally know where to turn for help and a diagnosis?

My husband Doug and I knew there was something terribly wrong; however, we did not know it was OCD. Actually twenty years ago, I had never even heard those letters strung together; it was not in the common vernacular as it is today. One day, Doug was listening to NPR and a PSA came on talking about obsessive-compulsive disorder. He could hardly wait to tell me about what he heard. It was kind of a “eureka moment.” The PSA closed with something like, “If you or a loved one might be suffering from OCD, there are OCD specialists in your area.” I got the name of an OCD doctor in my community and was fortunate enough to meet with him the same afternoon.

Once you were diagnosed, how did you feel, and how did you go about treating your symptoms?

I felt relief that the condition had a name, and I felt the biggest relief when my trusted OCD doctor also shared with me that OCD was not my fault and that it was a real medical condition. I was finally diagnosed at 32 years old, after suffering undiagnosed OCD for more than two decades. Part of my recovery and wellness process began with educating myself, reading everything that I could to find about OCD, my perpetrator and killer of joy. One of the first two things that I began doing with my doctor was exposure response prevention (ERP), and cognitive behavior therapy (CBT). I was dedicated to stay the course and dig myself out of the confines of my OCD prison.

Did you tell friends and family about your diagnosis? If so, how did you go about it?

At first, I did not. I felt too vulnerable in the beginning of my mental health journey. I wanted to have some experience under my belt before opening up to others. My first step was expressing myself to my doctor and husband and other folks came later.

13151020_994575027245951_891578085_nYou have a brand-new book on the market! How did you decide to write Leaving the OCD Circus?

I have read a lot of books and met with a lot of doctors and I felt it was time to share what I had learned with other sufferers and their loved ones. I constructed this book—text and pictures—to help other OCD sufferers out of their own constriction. I have been writing poetry and collecting imagery, especially vintage art and ephemera, nearly all my life. Pictures and words that really spoke to me at a core level. Some seemed to capture exactly what I was feeling. Some reminded me of pain, some of hope or the freedom I longed for. I’ve sprinkled them like bread crumbs throughout the book to help guide sufferers out of their OCD prison. Sharing and showing the key that I whittled for myself is intended to inspire others on their journey of wellness.

How did it feel to put everything in writing? Did you have any moments when you second-guessed your decision to put your story out there, and if so, how did you move past them?

I never second-guessed any of it; it was time to expose the monster that I had been secretly trying to hide. In a sense I was spilling the beans on my abuser. I did it with determination to help other people get on to their big happy lives much sooner than I did.

You own a charming retro-inspired gift shop in Howell, Michigan, and the website Retro-a-go-go.com. Does running your own business work better for you and your OCD symptoms than going to an office every day?

Yes, running my own business was the way to go for me. I need a home for my creativity, and it is very important to me that I set the tone of the environment and the culture. Corporate life in general was not for me, and OCD or not, I wanted out of that environment. By no means is owning my own business easy, but it is much more preferred. Retro-a-go-go.com is coming up on 12 years and going strong.

kirstenanddougYou’re married. Do you have any relationship advice for my readers who are either in relationships or who feel that they can never be in an intimate partnership because they have OCD?

Trust, patience, and understanding are keys to a healthy relationship for me. Doug is my best friend and encourages me to be mentally healthy. The healthier I got the more I could clearly see that OCD was affecting other people in my life and I did not like or want that. When I was deep in the throes of OCD more than twenty years ago, I was on the battlefield with OCD, doing everything to be compliant so the “abuser,” OCD, would not pound on me harder for my imperfections. I sort of had no room for anything but me and my OCD. Times have changed, and I have found a way to get on to my happy life. Now it is time to share what I know with others. I feel a real sense of responsibility.

If you could share just one piece of advice with others who have OCD, what would it be?

OCD is not your fault; it is a real medical condition. One step at a time and make your end goal mental health and wellness. Life is too rich and too wonderful to have it crushed by any illness, especially one that you can do something about. I value my time and my life so much—I cherish it and I keep doing the work that keeps me in the driver’s seat and OCD in the sidecar. OCD might pipe up with “Don’t you want to check the stove one more time?!” and I say, “Not today OCD, not today!”