Tag Archives: obsessive-compulsive disorder

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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Review: Payton Is Afraid of Dirt

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Suggested age range 6 to 11 years old

Kids with obsessive-compulsive disorder (OCD)—and their parents—will feel less alone and more empowered after they’ve curled up with Payton Is Afraid of Dirt by Shanna Simpson, illustrated by Idmary Hernandez (Future Horizons, 2017). Payton isn’t afraid of just dirt: He’s worried germs will make him sick, and he’ll get others sick, so he cleans his room, washes his hands, and avoids touching “dirty” objects. Compulsive hand-washing is perhaps the most widely known symptoms of OCD, and Payton performs this compulsion enough that his parents notice.

Payton’s family worried. Dad said, “Why are you cleaning your room so much?”

While no kid is lucky to have OCD, Payton is lucky that his compulsions were visible to his family and they were able to get him the right help. Too often family members don’t have any idea that kids are suffering because they’re dealing with mental compulsions they don’t know how to explain. Payton has a head start! His parents have been concerned for a while, and when it gets to the point that Payton no longer enjoys his favorite activity, playing baseball with his best friend, they decide to take him to a psychiatrist.

The scene with the diagnosing psychiatrist is a little long, but it’s thorough and helpful. It’s used to explain what OCD is and how it’s treated, and it should give young readers an idea of what an appointment with a psychiatrist will be like. Several strategies are noted, and medication is mentioned as a possibility as well. While the gold standard of exposure and response prevention (ERP) isn’t spelled out, it was hinted at when Payton slowly built up to touching a baseball, and readers may also like the ideas to put worries in a special box or to “shrink” obsessions in a machine.

I highly recommend that teachers and parents read Payton Is Afraid of Dirt; parents can read it themselves as well as to their child. The book ends on a hopeful note, and while the overall message may not reflect reality for many with OCD (as it takes an average of 14 to 17 years to get a proper diagnosis), it is positive: Payton is diagnosed early, his family is supportive, and he gets better, which is really the goal of spreading OCD awareness.

Tuesday Q&A: Ryan Bernstein

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Happy Tuesday! Today I’m hosting an incredible young man. At just 17 years old, Ryan Bernstein is shooting for the stars, working hard to spread awareness of obsessive-compulsive disorder. He’s writing a book, guys, and it isn’t even for personal gain! He plans to donate the proceeds to the International OCD Foundation, and he needs our help (you’ll see why!). Read his inspirational story of grappling with symptoms, getting a diagnosis, and getting better. Thanks for being here, Ryan!

Although you now know, at age 17, that you have OCD, it wasn’t so long ago that you felt anxious but didn’t know why. When were you diagnosed, and how did you realize what you were going through might be OCD? 

During my pre-teens I saw different doctors but they just chalked up my symptoms to becoming a teen. It took about 10 years to finally figure it out. I was recently diagnosed at age 15. It was really difficult to experience so much anxiety and not understand why for such a long period of time.

I was fortunate to go to a public high school that had some support systems in place, and when I was a freshman, I experienced a terrible panic attack. The social worker really helped me put a name to what I had been experiencing for so many years. I began seeing a therapist who specialized in OCD and anxiety and worked with him for about a year. I also did a lot of research on my own to learn more about OCD. The International OCD Foundation and their resources were invaluable for me.

Did your parents recognize any symptoms of OCD, or did it come as a surprise to them? How did you tell them what was going on?

My parents were very supportive but none of us knew why I was so anxious. It wasn’t until I started to develop more visible rituals that my mom thought it might be OCD.

I relied on my mom a lot and always shared with her what I was feeling. Sometimes it was really difficult to find the words, though, because everything felt so awful.

Once we had a diagnosis and learned more about OCD, the pieces fell into place. What my mom had seen as random acts, and what I had felt, now had a structure and made so much more sense.

Having OCD—especially undiagnosed OCD—can make a person feel alone. Did you talk to any friends about it? Do you have any advice for my readers who might not know how to broach the subject with their peers?

I felt very alone. I think that part of the problem with any mental illness is that you really look OK. In addition, there is a stigma associated with it so people tend to isolate. I thought I was the only person suffering with this problem.

Initially I did not seek out my friends. I was worried about how I would be perceived in my peer group. I wish I had opened up because it would have taken away some of the pressure I was feeling.

I remember having a bad anxiety attack one day at school and I just couldn’t get to class. I finally got up the courage to blurt out the words, “I’m really anxious right now.” To my surprise a few friends asked if they could help me.

After that experience I began to realize that I could ask for help. At first it was difficult. I still have a sheet titled, “Some Things that People with Anxiety want their Friends to Know.” It has really useful phrases that helped me communicate what I was feeling. I began to tell more of my friends about my anxiety and it felt good. I realized that by being more open it helped me feel less afraid. In doing so, I met others who were also struggling.

My advice is to not be afraid. Try to be as open and honest as you can with your friends. I know it is not easy. Find a time that works for both of you and have a one-on-one conversation with each of your friends. I found that if I asked for support my friends were happy to give it. Of course, there are those who will tease, and bully, and although I have experienced that, and it is not pleasant, I believe that closing yourself off from support is worse than taking a risk and being honest.

I have since started a support group at my school called “Hand in Hand.” We meet each week to discuss coping skills, and share our thoughts and feelings in a safe environment. It has been very well received, and I encourage other teens to start a support group if there isn’t one in the area.

What can teachers and school counselors do to help?

We are living in a time where diversity and disability is celebrated. I think that teachers and counselors need to learn more about OCD and respect that students are trying but it can be difficult for them. Avoid embarrassment. Be patient. Listen. Advocate for them.

Sometimes all students need is to feel accepted and understood even if it might not make sense. Expect some disorganization and forgetfulness- overwhelming anxiety can be distracting. Find the good and be compassionate.

What do you consider the biggest misconception about OCD, and how can we help shed light on it?

I think that the biggest misconception about OCD is that it is so narrowly defined as a hand washing, or perfectionist, or highly-organized-everything-in-its-place issue. I think that many people believe it’s not really an illness, that it can be controlled, and that it doesn’t really negatively affect a person’s life. I’m here to tell you emphatically that it does.

I think that the best thing that we can do as a community is to educate. Share your story to change the way people see OCD and by doing so you can inspire others to do the same. This is the very reason why I decided to write my book.

Tell us more about the book you’re writing, OCD to Me: An Anthology of Anxieties. What inspired you to start this project?

I was inspired to write a book a few years ago when I was feeling really lost and alone. I didn’t think anyone understood what I was experiencing. It would have been so helpful and empowering for me to read about others who were also struggling. Too often books are written about overcoming an illness. I wanted to create a book that could not only help people with OCD but educate people about OCD through a first-hand account of what having OCD feels like.

I wanted to provide a platform for people’s unique stories to be heard. I know that often people don’t want to share their personal information so I came up with the idea of an anonymous survey. People can answer four questions about their experience. I will then edit responses for clarity and put them in the book.

Here’s the survey.

My goal is to get at least 100 responses. I am halfway there! I want to get as many stories as possible to show that there isn’t one face to OCD. It afflicts people from every possible walk of life. I want to show how diverse as well as debilitating OCD can be, then maybe we can change the image of OCD, and the belief that mental illness only affects certain kinds of people.

My book will contain three sections. “OCD Defined” written by an expert in the field, “Practical Advice,” and “Amazing Personal Stories.” I will then find a publisher who believes in this project and get the book published.

All proceeds from the sale of OCD to Me: An Anthology of Anxieties will be donated to the International OCD Foundation in order to help broaden awareness and provide support to the OCD community. I want people to know about OCD, and I want to let people know they are not alone.

I hope your readers will help me by taking the survey!

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

It’s possible to overcome OCD. Don’t give up! It takes a lot of time, energy, and determination but you can do it. I remember thinking that I would never get better but I am now and I think the key was not being afraid to try. It is very frightening to face your fears, counterintuitive in fact, but take micro-steps and celebrate any success. Of course there will be setbacks so don’t be afraid to ask for help. People can’t support what they don’t understand. Be willing to share, speak up, get the word out. Together we can educate our communities.

Review of Turtles All the Way Down

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Oh, boy. John Green’s Turtles All the Way Down was the first fiction book I’ve read about OCD, and it didn’t disappoint. It did, however, take me a month to finish—and not because it was too long or because the story dragged, but because it was a little painful to read such a perfectly rendered description of what it’s like to have unwanted thoughts on a loop. It was upsetting and triggering but beautiful, too.

Once it reached the climax about three-fourths through I put the book down and couldn’t bring myself to pick it up for another two weeks. A co-worker who’d finished it told me it would all be okay, and that I had to finish it. Of course I did! Not only did I need to know what happened to our heroine Aza, I’d been planning on writing this review.

Just a note to all of you who are currently struggling or who relate to Aza’s contamination obsessions, you may not be ready for this book yet. However, you may find that you feel less alone because you can identify with the character. 

As I read I mentally noted a bazillion lines I wanted to write about here, but since Turtles All the Way Down is fiction, I want to make sure I don’t spoil anything! So I’ll keep it relatively light and say this: If you’ve ever felt like a burden to your friends, wished your parents would stop asking if you’re okay, thought you didn’t really need your medication, or had a hard time dating and getting intimate, this book will speak to you. Plus, it’s not all about OCD; there’s an intriguing mystery and some romance!

But you give your thoughts too much power, Aza. Thoughts are only thoughts. They are not you. You do belong to yourself, even when your thoughts don’t.

Those of us with OCD so often tell others how debilitating the disorder can be, trying to make people understand that it’s not a joke and that we don’t all love cleaning. John Green captures what it can mean to live with OCD, how your intrusive thoughts can eat away at you, threaten to destroy you—but somehow you get up the next morning and go about your day. Turtles All the Way Down could go a long way toward helping people understand that, yes, maybe someone with OCD can get out of bed, go to work, and keep one’s life in some semblance of order, but that doesn’t mean OCD shouldn’t be taken seriously.

Tuesday Q&A: Kate Stiffler

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Welcome Kate Stiffler! Kate, a mother of five kids, has found yoga to be tremendously helpful in dealing with her OCD. After years of struggling and mostly keeping her diagnosis to herself, Kate is ready to share her story. I couldn’t be more pleased to help her spread the word of hope and recovery. Thank you for being here, Kate!

When were you diagnosed with OCD, and how long did you have symptoms before that diagnosis? 

I was diagnosed with OCD in my 30s approximately 12 years after I started having recognizable symptoms of the disorder. Signs of OCD can be traced back to my early childhood where I do remember walking around saying to people “Everything is going to be OK.”

OCD is still misunderstood, and oftentimes people with OCD say they were surprised by their diagnosis because they thought it was all about excessive washing or checking, behaviors they never engaged in themselves. What made you think you might have OCD? 

I realized I had OCD when the obsessions/intrusions kept recurring over and over again no matter how much I tried to ignore or outthink them. I remember sitting in my bed crying in my pillow because they just did not make sense yet I could not stop them from entering my mind. The doubts, the “what if’s” they just intruded on every aspect of my life. The earlier years of my OCD were marked with clear compulsions such as washing my hands until they bled and taking showers that lasted for at least an hour. Over the years, the compulsions shifted to more internal neutralizing of the thoughts and checking behaviors.

Once you knew what was actually going on, did you tell loved ones right away? How did you decide who to tell, and how to tell them?

I really kept my OCD to myself for most of my early adulthood. My college years and graduate school years were years that I really did not know what was going on. I simply thought the OCD was a character flaw of mine and that I really was the terrible person the OCD made myself out to be. These years were marked with great sadness, confusion and isolation. It was not until years later that I sought formal help for my OCD. I entered many various forms of therapy from outpatient to inpatient at McLean. To this day there are only a few people who really know what is going on with my disorder, primarily my husband along with all the therapists I have encountered along the way.  

You own a yoga studio, and practicing yoga has been an important component in the recovery process. What is it about yoga that makes it so beneficial for our mental health in general, and OCD specifically?

Yoga saves lives. Yoga saved my life. I found yoga as a result of one of my earlier therapists recommending that I try it. I had  no idea what yoga was and had never taken a class before. After researching my city for yoga studios, I landed in a Hot Yoga class.  From the moment I stepped on the yoga mat my life changed. Yoga was a place I felt at peace. Yoga was a place I could go inside of myself. Yoga was a time I could reflect on my life and begin to declutter from useless garbage that kept me weighted down physically, emotionally, and spiritually. Yoga was a release for me. It allowed me to take time to myself to create space and just be. The daily practice of yoga allowed me evolve as a human being and begin to separate myself from my thoughts. As you know, with OCD this can be a huge help in the process of recovery. Yoga also taught me how to be more comfortable in the uncomfortable. It trained me to stay in situations and work through them rather than running away from them. These tools have been invaluable to me as a person living with OCD.

Katie, I can’t even touch my toes, so I feel anxious about taking a yoga class. How can I ease into it and experience the benefits?

Just show up! This is what I tell everyone who says the same thing. Yoga is not about looking perfect or even touching your toes. Yoga is SO much more than that! The first thing I would say to someone like you is just meet yourself where you are right now. Talk to qualified instructors and let them guide you into the class that would work best for you. There are many different kinds of yoga. Make sure you are educated on the different styles of yoga and what they entail and then choose which one resonates with your goals. Everyone can do yoga! That is the beautiful thing about it. There is something for everyone!

What else has helped you deal with OCD? Have you tried anything you wouldn’t do again, or something you were surprised to find therapeutic? 

I would say that connecting with others who have OCD has been most helpful for me. It wasn’t until fairly recently that I really started to understand that no one can do the work for you. It is up to you to be your own cheerleader and advocate. I have begun networking with other advocates in the OCD community to help spread awareness and share my story in hopes of helping others realize we are all in this together. Support and education are really important tools in getting the disorder under control. There is not really anything I wouldn’t do again. I have to say however that I do not like ERP. I found that it made my anxiety spike doing the exposures and I had a really hard time understanding the role of ERP. My brain could not understand for a really long time why I would want to do something that I am scared to death of. My brain wanted to run far away from the fears not towards them. I had a hard time separating the process with myself. In my mind, I felt like if I did the exposures it meant that I either wanted to really do the bad thing or I was the bad thing. I had a really hard time separating them. I wish I had been more educated on the ERP process from the get-go and taught that these things are very common misconceptions  that others also experience. I think if I was told this early on, it would have saved me a lot of time that I spent trying to figure it out on my own over the course of many more years. I have found writing to be very therapeutic for my OCD recovery. Sharing my thoughts with others, recognizing that I am not alone has been very meaningful for me.

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

You are going to be OK! Trust yourself. Love yourself. Be yourself. There is no one out there like you. Talk to other people who have OCD. You are not alone. OCD is manageable and you can live a very happy and successful life with OCD. There are going to be good days and not so good days. Don’t give up. Keep remembering its up to you what you want to do with your life. You can gain control over the OCD. Support and education go a very long way in recovery. Don’t be ashamed of yourself. Be proud of yourself and all  your efforts. Reach out to others like me and Alison who are here to help support you and cheer you on when you feel you cannot do it for yourself. You are a gift to this world. Never forget that you matter!

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.

#ocdweek with Chrissie Hodges

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Happy OCD Awareness Week! As you may know, I’m the president of OCD Twin Cities, the local affiliate of the International OCD Foundation (IOCDF), and I’m excited to host Chrissie Hodges this Thursday! If you’re in the area, I hope you’ll join us from 7 to 9 at the Wilder Center, Auditorium A, 451 Lexington Parkway North, St. Paul, MN 55104.

Chrissie is an incredible advocate for OCD awareness. She often speaks at conferences, to law enforcement, and to lawmakers, appears in live videos for Mental Health on The Mighty, and hosts a YouTube channel, Chrissie Hodges/Pure OCD Advocate.

You received the 2017 International OCD Foundation Hero Award. How did that make you feel? 

It was a great honor to receive the hero award, especially following in the footsteps of a couple of my favorite advocates! I think it made me feel more encouraged, not only in my own advocacy, but in encouraging others to pursue their own and find ways of telling and expressing their lived experience. It was a weird feeling, kind of like the impostor syndrome. I don’t feel like my story of survival and recovery or even my ability to talk about it so openly is heroic…I feel like the people I connect with every day in my work who are actively working toward the courage to get better and face this beast of an illness are my true heroes, and they are the reason I find the courage every day to keep speaking out. Anyone who lives with OCD and survives each day with it is a hero in their own right!

Your memoir, Pure OCD: The Invisible Side of Obsessive-Compulsive Disorder, came out this past year. Why did you write it? What do you hope people will get from it?

I originally wrote is as a tool for myself to read during relapses to remind myself that I really do have OCD. I struggle terribly with the “what if I don’t really have OCD and my obsessions are real” fear, so I thought if I could read about my history with it, it could be a good reminder and motivator in remembering that therapy works and things will get better. When I decided to publish it as a memoir, I hoped that people could use what I had been through to normalize their experience and feel less alone.

People love your live videos! How do you choose the topics? Has there been one video or subject that’s been particularly difficult to talk about?

Thank you! I usually choose topics based on what I have and what my clients are suffering with. The journey to recovery is so complex with OCD, it really isn’t just about therapy then recovery. It’s so emotionally difficult, so I try to do videos based on what I see as common obstacles for my clients. At first the difficult videos were the topics that are so taboo and the lesser known physical symptoms like groin movement and urges. But after being so open over and over and getting so much positive feedback, it has been so much easier to just be absolutely transparent without reservation.

You’ve shed a lot of light on sexual intrusive thoughts and helped people feel less ashamed of them. Tell us why you’re known as “Groinal Girl” among the OCD community.

Haha! It was at the IOCDF conference in Chicago sitting on a panel with you when I decided to open up publicly about how one of my most tormenting symptoms is when I get “the groinal syndrome,” which is a compulsion of checking and rechecking the groin area for movement or “arousal” when exposed to a sexual intrusive thought. I was so nervous, but the reaction was overwhelming and helped individuals who experience it feel less alone. I did a video on it shortly after and it is highly successful and has been watched more than almost any of my other videos! I think I self-proclaimed the #groinalgirl title!

“Groinal Girl” isn’t the only title you have. You’re a certified peer specialist. Tell us what that means.

I fell into peer support shortly after I began my advocacy career. I was helping people with their journey through OCD and realized that I needed formal training to learn to support people and not contribute to their symptoms! I went through intense training here in Colorado and worked full-time with individuals in the community as well as on the teams at the Colorado State Institution at Fort Logan with individuals with major mental illness and substance use disorders. I loved it. Simultaneously, I was working alongside Matt Myles, OCD specialist here in Denver, as an ERP coach and peer support under his supervision.

I saw the need for peer support in OCD treatment and recovery and in 2016 I launched my business doing peer support and consultations for OCD therapist referrals and resources worldwide. Through peer support, I meet with individuals to help support and normalize their experience by using my own lived experience. It has been wildly successful and I work with individuals with sessions one-time, ongoing, or as needed in any stage of treatment before or after. I also work with OCD therapists to coach individuals through exposures by enforcing their hierarchy plan. Both are incredibly beneficial in instilling hope and support to the client as they work toward recovery.

What can attendees of the OCD Twin Cities OCD Awareness Week event expect? 

I’m hoping to share my lived experience and story of not only my medical recovery, but my emotional recovery, which was equally as tough to work through. I’m hoping people will walk away feeling a sense of belonging to a community where we don’t have to feel shame, guilt, or embarrassment on what we’ve been through.

Tuesday Q&A: Abby Heugel

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AbbyHeadWelcome Abby Heugel, one of my favorite people to follow on Twitter! While I do like scrolling through Twitter to find tweets relevant to OCD and general mental health, it’s also really refreshing to just giggle now and then. Abby manages to shed some hilarious light on OCD and anxiety—without making people who have OCD the butt of her jokes. Knowing you’re not the only person who gets anxious every Sunday night can be just as important as knowing you’re not the only person who has upsetting intrusive thoughts.

A few years ago I came across My OCD By the Numbers, a post you wrote for The Huffington Post, and I loved it so I shared it on Twitter, Facebook, and my blog. Not long after I also started to follow a Twitter personality known as Abby Has Issues. Yes, I’m a little slow, but it took me several more months before I realized you were the same person. While your tweets definitely touch on anxiety, they’re mostly lighthearted and funny. Did you make a conscious decision to keep your Twitter presence more upbeat?

I try and keep my Facebook and Twitter updates more along the lines of humor, although I do bring depression and anxiety into them from time to time seeing as that’s a huge part of my life. But I also want an escape, and that’s what Twitter and Facebook are for me. I even feel really self-conscious sharing my more personal blog posts on Facebook, even though they’re often met with people who say that they can relate. That said, I never tweet out links to the one or two “serious” blog posts I’ve written over the past year. For me, it’s just not worth it.

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You’re one of the funniest people I follow on Twitter, which is exactly why I followed you in the first place. As you noted on your blog, your most popular post is The 10 Commandments of Grocery Shopping. Your tweets were listed among the funniest of the year in 2015 and 2016. You’ve been named a Top 25 Humor Blogger. And you manage to make people laugh and poke fun at anxiety without stigmatizing mental illness or being a jerk. Does humor help you face your fears and cope with anxiety? How do you feel about jokes that do perpetuate stigma?

Yes! I feel like it’s a great escape for me, and I try not to obsess about whether or not anyone anyone is actually reading my stuff, but good luck with that. And the stupid OCD jokes really get to me, which is why I try and share my story and experience. You wouldn’t make tasteless jokes about cancer, so why is mental health fair game?

When did you decide to share your experience with OCD? How did you know you were ready, and what was the response like?

After a while I got tired of hiding it, seeing as it pretty much took over my life. I felt like people should know how hard it really is to even function on a day-to-day basis sometimes, and that each day is really a challenge for me in certain ways. It almost felt like I was living a double life—what I projected online and the issues I dealt with in reality. When I shared a couple blog posts about OCD and depression, there was actually a really great response. People sent me messages saying they could relate, they left comments thanking me for being so open, etc. It was a little scary because people in real life could also read it, but at the same time it was kind of a relief.

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As most of us with OCD know, there’s no cure per se. We can learn to manage OCD, anxiety, and depression—and because of that we also fool others into thinking everything is peachy-keen. What do you wish people understood about what it means to have a mental illness and an often typical, productive life?

I think it’s best summed up in this blog post, which I was really, really hesitant to publish simply because OCD, depression, anxiety, eating disorders, etc. are so misunderstood. But that’s also why I wrote it—to hopefully provide a little bit more understanding. 

Whereas normal stresses would be difficult for “average” people, they are compounded ten-fold for people struggling with a mental illness. Even changing the time of plans can send me into a tailspin at times because it interrupts my routine. I’ve been trying to be more flexible and I know it’s not the end of the world, but it’s still a struggle. And when you’re depressed? Lord, some days you just want a high-five for actually washing your hair or making a phone call you’ve been putting off for a week, even though you appear to be a super productive person professionally, for example. People can’t see that just by looking at you. It’s really frustrating.

And speaking of productivity, you’ve done so much! You blog, you’ve written a couple books and contributed essays to others, you tweet regularly. How do you balance it all, and how does having anxiety affect your drive?

Well, I don’t blog that much anymore at all and the books were done more than five years ago, so I really don’t do that much. Ha. But thank you! I recently lost my job, which has thrown me into a really scary place (see above about stresses happening to normal people versus those with OCD/anxiety/depression) so I guess I’ll have more time to tweet! Actually, I’ve been tweeting even less because to be honest, I feel like my medication might be numbing my creativity, which is not good for a writer. I have to choose between being balanced (ish) and less creative or a total mess but full of more creative ideas.

That said, I was extremely obsessive with my last job, much to my own detriment. I felt like I always had to be working (and working out) and couldn’t even relax and watch TV without feeling like I had to be “on” and doing something productive. It wasn’t healthy. So instead of freaking out about this unemployment, which I am trying not to do, I’m trying to frame it as a new chance to do something with a healthier frame of mind. I know I’m damn good at what I do, so now I just have to convince someone else of that so they hire me to work remotely from home again!

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You recently spoke to CNN about your exercise addiction. First, congratulations on the major outlet for spreading awareness! Second, what advice do you have for someone who may be struggling with the same issue?

It’s honestly my biggest struggle, as it’s how I deal with my intense anxiety and the OCD/routine keeps me doing just as much day after day after day to the point of a detriment to my health. It’s not about vanity. It’s about routine and anxiety, which people don’t understand. My advice would be to tell someone, to be accountable, to get professional help. I’ve been going to therapy now for a few months, as I mentioned in the article, and while I’m still in a bad spot exercise-wise, I have accountability and we have small, manageable goals. Secrets keep you sick, and there is so much secrecy and often shame associated with mental illness, which can stop you from getting help.

You have to want to get better and know that if you feel stuck and miserable with how things are right now, you really have nothing to lose by trying to change those maladaptive behaviors. If you’re going to be uncomfortable either way, might as well be in a positive direction!

When did you realize you had OCD? How long had you been experiencing symptoms before you were diagnosed?

Looking back now I see that I had OCD symptoms and behaviors even as a little kid. They were dormant for quite awhile, but they reappeared in college following a couple of traumatic events. They always manifested with food and exercise, which is extra tricky seeing as those are often viewed as “healthy” outlets. But anything taken to extremes is unhealthy. It was during my second (short) inpatient stay that they finally realized it wasn’t an eating disorder, it was OCD that manifested itself in these behaviors. That was a huge relief that people finally “got” it. It wasn’t about vanity. I didn’t think I was fat. I just wanted an escape from myself.

Once you did know it was OCD, what were your next steps?

It literally took another decade for me get help again. This happened about a year and a half ago when my physical health got so bad I had to have blood transfusions because I was anemic. My doctor told me either I found a psychiatrist and get help or she would stop seeing me and I would left on my own. I finally found one that would work with my outpatient, and a therapist willing to see me, and that’s where medication came it. It took some trial and error and a lot of frustration, but right now I’m on some meds that are still minimal in terms of dosage (I loathe drugs) but appear to be effective. There’s nothing wrong with needing medication. I know now that I’ll probably need it for the rest of my life, but as long as it keeps me from hitting the lowest of the lows or the manic highest of the highs, I’m okay with that.

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

Just to know that you’re not alone. There are so many misconceptions and stereotypes that reaching out can feel kind of fruitless, but you’re not the only one that feels the same way that you do. You’re not a freak. There are things that can help you to deal with it if you’re open to sharing your struggles. Trust me when I say it will be a relief…and isn’t that what all of us want?

Tuesday Q&A: Barbara Claypole White

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Barbara-Claypole-WhiteGreetings! My American readers: Happy Fourth of July! Today’s guest is a Brit living in America, so part of me wants to make a Seinfeld-esque attempt at observational humor, but the other part of me says, “Dotson, you’re no Seinfeld.” Barbara, we’re glad you’re here—both in the United States and in this latest edition of Tuesday Q&A.

Barbara is a successful novelist, which takes dedication and self-discipline; maintains several gardens even though a humongous black snake often makes an appearance; advocates for OCD awareness; and has been a loving but firm source of support for her son with OCD. In short, she’s tough, and I love that. Parents of children with OCD—whether they’re little ones or young adults—read on.

Your young adult son has OCD. How did you realize that he might have OCD? 

Such a great question because it took years to get a diagnosis and treatment. I learned the hard way that parents need to do their research and find a psychologist well versed in exposure and response prevention (ERP) therapy. With the gift of hindsight, I can trace my son’s anxiety back to when he was four, but he didn’t receive the help he needed until he was at least nine. Maybe ten.

He was a happy, well-balanced child who gradually started fussing over every detail: Did that cloud contain a tornado? Was the mold on a tree anthrax? I remember saying to my husband, “I feel as if I have to edit life for him.” I was concerned, but I’d never heard of OCD.

Around his fifth birthday, he developed stomach problems and headaches. His pediatrician worried he might be a celiac or have Crohn’s disease, and after a variety of invasive tests that came up negative, I took him to a holistic doctor. He said, “Watch his body language. Your son’s anxious.” Bingo. That was our first turning point.

Then his sleep patterns went to hell, and we consulted with a well-respected child psychologist. She mentioned OCD in passing and told me I had a great son. I did; I do. But she offered no real explanations for his obsessive behavior, and when I told her I helped him avoid situations that made him fearful, she congratulated me on being a good mother. No, I was being an enabler. Bad, bad mother!

Finally, after a family vacation left us in tatters, she threw up her hands and said, “Medicate!” and I refused. Instead, I did what I do as a writer: I turned to research, which is how I stumbled across the IOCDF website and learned that Dr. March’s clinic was down the road at Duke. (I really, really wish someone in the local medical field had shared that information with me.) I enrolled my son, and his second psychologist—who he still sees—was an instant fit for our family.

We did a year of intense exposure therapy, which I charted like a military campaign, but the progress was slow. When the psychologist suggested meds, I felt we had failed, but she explained drugs could lower the anxiety enough so that we could do more work. And she was right. Three years later my son was off meds and 95 percent OCD-free. Life was peachy…until the stress of college visits.

Since then, we’ve been on and off the OCD roller coaster. However, my son never lets OCD hold him back. A kid who was once terrified of flying opted for a university two plane rides away and recently graduated Phi Beta Kappa from Oberlin College. Not bad, huh? Some days are golden, some feel as if they will never end, but we’ve found acceptance as a family. That doesn’t mean we’ve quit; it means we understand that our son has a chronic illness, which needs managing.

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OCD is undoubtedly difficult for the person who has it, but it’s hard on loved ones as well. How did you work through the diagnosis and treatment as a family?

We learned to laugh hard and often, and I’m ridiculously tough for a 5’ 2” woman (my guys are both empathetic and sensitive. Emotional sponges, the pair of them). I became the family cheerleader and joined a local support group. The support group taught me that (a) I needed to be around other moms in the trenches with OCD, and (b) I was blessed to have a strong marriage. I watched every other marriage in that group fail—with one exception. When another member asked why I thought my family had survived, I replied, “Because I’m a stay-at-home mother with one child.” But later I realized it’s because my husband and I make a good team.

We also reached an agreement, early in our son’s therapy, that was essential to its success. We have very different parenting styles, and mixed signals are not an option when you’re battling OCD. As the primary parent, I took over our son’s treatment 100 percent, and my husband agreed to never countermand how I dealt with the OCD. When our son spiraled, I could focus on nothing other than the techniques his psychologist had taught us, but with the security of knowing my husband had my back if I couldn’t cope. One evening, for example, he was at a work dinner when I called and screamed, “I’m losing it.” He was home within half an hour.

I also learned to not beat myself up when I needed a break. A fried caregiver is a useless caregiver, and you have to pay attention to your own mental health. This probably explains why I have fourteen flowerbeds. (Gardening takes me to my happy place—even when I’m ranting about voles.)

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It’s one thing to have a young child with OCD, but it must be quite another to have an adult child who’s trying to live his own life and is naturally separating from the care and oversight of his parent. How did you handle the transition between having your son at home with you and having him live on his own?

It was extremely difficult and equally tricky in reverse (our son is now transitioning back to life at home). When he was 10, 11, 12, I dragged him through exposure therapy with the knowledge I could manipulate him. Horrible confession, but true. Obviously, that’s not the case with a young adult, and I was thankful for every college semester he completed without mental collapse.

But before he left for college, we secured a safety net. Our son opted to stay with his local mental health team, so we set up a system for phone consults. We also made sure the on-campus clinic had our son’s files and arranged to meet with the director during parent orientation.

Communication as a family is key, so we set up weekly Skype chats that allowed us to hear/see/judge first-hand how he was doing. We also told him, from day one, “Even if it’s two in the morning, call if you need us.” And he often did.

Meanwhile, I kept educating myself about OCD and tried to stay alert for reassurance seeking. And failed. When I realized I’d slipped back into the role of enabler, Jon Hershfield’s When a Family Member Has OCD became my life raft. (Buy that book, y’all. Buy it now!)

I also think having a coach—even long distance—makes a world of difference. Therapy is heartbreaking and painful, but it does work. You can help your grown child navigate exposures if you’re willing to be the horrible person responsible for inflicting pain (by raising his anxiety in an exposure). My son and I did this throughout the month of January—with the support of his psychologist—and it make a world of difference to the last four months of college.

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It must be so difficult to see your child in pain and struggling knowing that reassurance can actually impede the recovery process. What advice can you give other parents on navigating this fine line?

First off, hugs to any parent struggling with this. Dealing with OCD is counterintuitive to the most basic parenting instinct: offer reassurance, right? Wrong. If you need a reminder of why, read Jon’s book. When our son was in a bad place, we set a cap on the number of times he could check each day and then lowered it gradually. But this has to be done with your loved one’s approval. I can only repeat: therapy is hell for everyone. Go slowly.

I always start with the simple phrase: “You’re checking.” Also, I remind him of the obvious: Have you eaten today? Are you getting enough sleep? His anxiety spikes when he’s hunger or tired, which makes perfect sense.

To sum up: offer love and support, not judgment. And try to use gentle reminders that the techniques work—if your loved one uses them.

You’re an A2A Advocate. Tell us more about your efforts to spread awareness of OCD.

My efforts are never enough, but I try to support the IOCDF through random donations and social media, and I do whatever Jeff Bell of A2A asks of me. Fiction, however, is my main vehicle. I visit many book clubs, and those visits tend to become open therapy sessions. For me that’s key: I need to keep talking, keep sharing my story, keep reaching out to others. Living in the world of OCD can be isolating, and the knowledge that you’re not alone can make a world of difference. It did for me. There is no shame, and those of us who have acceptance can help those suffering in silence.

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The Unfinished Garden, your first novel, centers around a character with OCD. What inspired you to write about OCD after having dealt with it in your own life? 

I love James Nealy, my first hero, and I owe him everything. He set me on my path to writing hopeful family drama with a healthy dose of mental illness.

The story that would become The Unfinished Garden stared with a different hero. After my son emerged victorious from the first round of exposure therapy, James marched into my head and refused to leave. That’s the kind of guy my James is: persistent. I was also drawn to the idea of someone who’d kept the OCD at bay until something in his personal life re-triggered it, and he decided to fight back. (Ironically, my son’s OCD was in remission when I wrote the novel, but returned full force while I was launching it.)

Once I realized I couldn’t shake James, I tore the manuscript apart and rewrote it with James as the hero, but the story was still told exclusively from my heroine’s point of view. Then a famous agent told me James would never make it as a romantic hero. “He’s too dark,” she said. My British war mentality kicked in, and I thought, “Fine. I’ve got nothing to lose then, have I?”

I rewrote the manuscript again, giving James his own chapters. I took readers inside his head and let him talk about “the voice.” Once I’d finished, I landed the agent of my dreams, Nalini Akolekar. Nalini is my guardian angel. She gets that my family always come first, and she took The Perfect Son to Lake Union Publishing, where it became a Goodreads Choice Awards Nominee for best fiction 2015. In a category with Harper Lee. Squee!

I never ask my heroes: Are you too dark? Now I ask: Are you dark enough? James led directly to Felix Fitzwilliam of The Perfect Son. (Felix has undiagnosed obsessive-compulsive personality disorder.) And Felix led to Marianne Stokes in Echoes of Family. (Marianne is a successful music industry executive who happens to have bipolar disorder.)

Your next book features a mother with postpartum OCD. How did you decide on this character? Was there anything you learned in your research that surprised you?

Yes! The Promise Between Us, which comes out in January, returns to OCD. And it’s just been listed on Goodreads, so please pop over there and add it to your “want to read” shelf. What’s it about? I’ll let my real-life hero tell you:

If you leave your newborn child because you have unstoppable thoughts of harming her, are you a good mother or a terrible one? This dilemma is at the heart of Barbara Claypole White’s novel, a wrenching story of how one woman’s OCD has a ripple effect on those around her—including the people she tried hardest to protect. This is an eye-opening and realistic exploration of mental illness—a topic that greatly deserves to be front and center. — Jodi Picoult, NYT bestselling author of Small Great Things

I’ve always wanted to write more about OCD, and until I found Katie Mack, I had assumed that meant more James. Katie’s a metal artist who took her first welding class as an exposure. How did I find her? Through a heartbreaking incident in the OCD community.

A member of a private, online support group posted about her struggles with pedophile OCD, someone leaked her comments, and her employer fired her. That story haunted me for weeks, and it led me to postpartum OCD and an interview with the amazing Angie Alexander. The moment Angie referred to harm OCD as “the dirty underwear of the OCD world,” I knew I had found my new heroine.

The research was gut-wrenching, but I was fascinated to learn that postpartum OCD can also affect dads and grandparents. And some of the research taught me new coping techniques. My learning curve with OCD never ends…

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

As a teenager, I had two specific OCD fears (although I only figured this out recently). I’m not sure why I never developed full-blown OCD, but I would guess it’s because my life has been one big exposure. Like my son, I chose to go far away for college, and every success I’ve achieved in life has come from moving way, way beyond my comfort zone. I can push myself hard because I’m wired that way, and I’m ridiculously good at positive thinking. However, I would never encourage someone struggling with severe OCD to stay in the boxing ring in the way I would. (Did I mention I’m not good at quitting?) When my son was younger, I often pushed too hard on exposures and had to learn that it’s okay to fail. Now when his OCD is loud, I remind my son that a temporary surrender is a chance to pull back and regroup. It’s not defeat. Even in the OCD world, bad days end and each new day brings hope. Never lose sight of that hope.

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!