Tag Archives: OCD

Catching Up With Jon Hershfield

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I first hosted Jon Hershfield in a Tuesday Q&A in 2015 and he’s done so much since then it’s time to have him back! With four books under his belt, he puts authors like me to shame, so I don’t know why I’m continuing to promote him. But, really, he has a wealth of practical advice to offer and always does so with humor and compassion. We’re lucky to have him in the OCD community.

A lot has happened since we last chatted! You may be the most ambitious person I know: You just published your fourth book, Overcoming Harm OCDOne of the most common questions I hear about harm-related intrusive thoughts is “How will ERP work for me? It’s not like I can walk around with a sharp knife.” How would you answer that question as a therapist?

Well, you can literally walk around with a sharp knife. Normally we do this when we’re on our way to divide a sandwich. But the question has to do with concern about causing actual harm in the course of doing exposure to a fear of causing harm. In ERP we do a lot of scary things, but what we don’t do is actually hurt people. In OCD there’s been some problematic training of the brain to assign “danger” to uncertainty about harm thoughts. So if I see a knife and I have an intrusive thought of causing harm with it, my brain may believe we are in danger. ERP works by getting in the ring with that uncertainty, resisting compulsions and other safety behaviors, and retraining the brain to have a different association with the uncertainty. So actually, yeah, handling a sharp knife in the presence of unwanted thoughts and other triggers can be really good ERP. I think it’s easy to get confused here because one might think we don’t have people stab strangers as exposure simply because it’s wrong. It is wrong, but that’s not really why we don’t do it. We don’t do it because that would fail to actually teach the brain how to handle uncertainty. For exposures where handling a knife may be complicated (e.g., you can’t bring one on an airplane), we have imaginal exposure where we use writing as a strategy to trick the brain into thinking we could be in danger. In this state, we practice resisting compulsions and we create new learning about being uncertain. People with harm OCD are not the ticking time bombs they think they are, but no amount of me telling them this will actually touch the OCD. They have to experience the exposure without the compulsions to truly understand this.

We know that getting the right diagnosis and proper treatment can take years, and I’ve always wondered if it takes longer for folks with harm obsessions. When I was worried I’d hurt a child, I was afraid to tell anyone, even a therapist, because I thought they’d deem me a risk to society and call the police. In your experience, are individuals with harm obsessions less likely to seek help than those with, say, a germ phobia? Or is their fear that they’ll hurt somebody so strong they feel they must be stopped before it’s too late?

Both of these things are very common in unwanted violent obsessions. A person with harm OCD may avoid treatment because of the concern that the treatment provider will have them hospitalized or arrested, or that disclosure of these thoughts will bring shame and scorn to them and their families. In more severe cases, anxiety can be so high and insight so low that a belief develops in the mind of the person with OCD that they must be defective at the core. Essentially, they imagine that going to treatment will reveal this defect and the borrowed time they’re living with before hurting someone will come to a sudden end. We can largely blame external stigma about mental health issues, especially as it relates to intrusive thoughts, for inhibiting people from seeking help. But self-stigma is even more powerful and the belief that having these thoughts makes us immoral or bad keeps a lot of people from asking for help.

We know reassurance seeking is a compulsion, and giving reassurance only adds roadblocks to the recovery process, so what is the best way to help a loved one with these upsetting intrusive thoughts?

Loved ones can educate themselves about the disorder. Knowing your loved one without OCD understands that you have OCD is reassuring in the best possible way. If the sufferer and the family member (or partner, etc.) can work together with compassion and an educated understanding of the disorder, navigating reassurance becomes easier. Collaborating on non-reassuring, but compassionate, responses makes a huge difference. So rather than constantly telling a person with harm OCD that they’ll never hurt anyone, they can find appropriate ways of telling them that they understand OCD is really painful, that they are proud of and support the work that’s being done to overcome it, and that there are several shows on Netflix right now that demand more attention than the question on the table at the moment. Of course, none of this type of interaction is possible without empathy and kindness. Helping them access treatment when possible, supporting that treatment, and never confusing the symptoms with who the person really is are all instrumental.

Speaking of not giving in to compulsions, let’s talk about your book When a Family Member Has OCDIt must be hard for parents to resist the urge to act as a therapist themselves, and to instead support their child through the recovery process. What would you tell a parent who is at his wit’s end and just wants to make life easier for his child, even if that means doing the “wrong” thing?

In writing When a Family Member Has OCD, I really kept in mind two audiences: one is the family member who wants to better understand a loved one with OCD and the other is the OCD sufferer who wants to be understood. Families operate as systems. There is no such thing as a child with OCD that exists in a vacuum where the child just gets fixed by the therapist and life goes back to normal. A child with OCD does hard work with CBT/ERP to master the disorder. The parent of that child must also be willing to do exposure to their own fear that they aren’t doing enough to relieve their child’s suffering. It’s excruciating, but when parents sabotage the treatment by providing reassurance and accommodating rituals, they just set the stage for more pain for everyone later. Reassurance actually doesn’t make life easier for the child because it sends the message to the child’s brain that there was something dangerous to reassure about and that they could not have coped without your intervention. Confronting the discomfort over withholding reassurance means sitting with uncertainty about how much pain you and your child can withstand in the face of OCD. It’s not easy. But parents who overcome this fear get a better understanding of what it’s like for their child to overcome fear and when the child improves, the parent’s relationship to anxiety changes too, and the whole system improves.

You co-authored Everyday Mindfulness for OCD with Shala Nicely, an inspiring read about how to enhance ERP with mindfulness techniques. I’ll admit that I always thought sitting in silence with my horrific thoughts felt a little like torture—and many people can’t believe we’re supposed to accept those thoughts.

It’s an interesting way we often put it—“to sit in silence with horrific thoughts.” There are some inherent problems in framing it this way. First, it implies that in the absence of distraction, it’s just the self and the thoughts alone in space. But this isn’t true. In the absence of distraction, we see things as they really are, which includes input from all five senses and, yes, thoughts. So it’s really being in the company of six streams of information and treating them all as such. Sound, touch, thoughts, and so on are all just objects of attention being projected onto the screen of the mind, so if we learn how to pay attention, there’s a lot more to look at than just sitting with obsessions. This highlights the other problem, that word “horrific.” We get so used to categorizing thoughts like movie genres that we easily forget how thoughts are just words and pictures. They don’t really have positive or negative qualities unless we decide that they do. Yes, the thought of harming my children abhors me. But if I write “harming my children” in red marker on a piece of paper, the only thing that’s changed about the paper is that it has red ink on it. The same is true of us. When we think a thought, the thought is just words scribbled on the mind. It doesn’t change who we are.

Tell us how mindfulness can help, and explain why it’s a myth that meditation means completely clearing our minds of all thoughts.

Two problems occur in the way the OCD mind operates that can both be addressed with mindfulness, which simply means watching the mind objectively. First, the mind wanders from the present, as it should, no different than a puppy sniffing things on a walk around the block. But we often fail to notice that it’s wandered and then, in a way, we find the puppy pooping on the neighbor’s porch. In other words, we get lost in our obsessive thoughts because we have trouble paying attention to where the mind is in any given moment. Then, when we discover that we’ve been pulled away by an obsession, the disorder sets a precondition for returning to the present. We feel obliged to neutralize the obsession (i.e., get certainty that it isn’t true), to do a compulsion, and then we get permission to return to wherever we were before we got distracted. If, on the other hand, we had the capacity to notice early on when the mind has been pulled away by an obsession and could simply start over in that moment as if it never happened, without permission from the OCD, we’d be much more in command. Meditation is an exercise that targets these two strengths, of recognizing where the mind is in each moment, and starting over when we see the mind distracted. By definition, this requires the mind to not be clear, but to see it clearly. Have all the thoughts, but know that they are thoughts and don’t try to fix them.

What’s next for you?

It’s been brought to my attention that I’ve written four books in the past five years or so. I’m hoping that Overcoming Harm OCD helps more than just the kind, gentle, and creative people I’ve encountered in my clinical work, but harm OCD sufferers everywhere. I also hope it serves as an excuse for me to slow down before I find myself writing something about sexual obsessions. So what’s really “next” for me is just continuing to build my practice and doing the best I can to help empower the most people in their OCD recovery.

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Tuesday Q&A: Leah Adair

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Leah Adair is a delight! I’m lucky enough to know her, and today you get to know more about her and her journey with obsessive-compulsive disorder (OCD). Leah is full of positivity and insight and realizes that even with the torture that OCD has caused in her life she still has plenty to be thankful for. Thank you for being here, Leah!

When did you first experience symptoms of OCD, and how did you eventually realize what you’d been experiencing might be OCD?

I didn’t fully understand OCD until it upended my life five years ago. Prior to this time, I had symptoms, but they were manageable. As a child, I often apologized over and over and over again for things that weren’t even my fault. I had worries that I said something blasphemous to someone during a conversation. I would rerun conversations over and over in my head after talking with someone. I also had extremely inappropriate words get stuck on a mental loop in my head. Neither of these obsessions took a major toll on my life. I just chalked them up to being weird thoughts.

In the fall of 2010 I was hospitalized in the ICU with double pneumonia. I was on life support at the age of 28. It was a very scary time for my entire family. My parents are both medical professionals and they knew how dire this situation was. As I’ve done more research on OCD, I believe there could be a link to major medical experiences and OCD in some people. I had frequent ear infections as a child and ended up with tubes in both ears as well. Both of these major illnesses could have had an impact on my brain chemistry. Who knows—OCD also runs in families. My brother has it and I know of a few extended family members with an OCD diagnosis.

Five years ago I was in the throes of parent-teacher conferences, we were hosting some out-of-town guests, and we were getting ready to go out of state for the weekend. I was going about my day-to-day life when a thought popped into my head. Most people would just let a thought like this pass on by. My brain got stuck in this thought. It cycled through my brain nonstop. I couldn’t turn it off. Everywhere I looked, my obsession seemed to be there. It was torture. I couldn’t sleep for several months. I’d average three hours of sleep per night. I was barely able to eat and in a span of four months I lost over 30 pounds. This isn’t a diet I would recommend to anyone. I was tormented by this thought (obsession), and my compulsion was to ask for reassurance via my parents and the internet—I was constantly searching the internet to figure this out. I didn’t know it was OCD until I ran across an article about different forms of this illness. I always equated OCD with order and cleanliness. I’m someone who wants solutions to most everything. I scheduled an appointment with a therapist, started researching all of the natural remedies for OCD/anxiety, and dove into an intense workout regimen (thinking the endorphins would kick this nasty beast to the curb). The therapist I originally went to had no idea how to treat OCD. I also visited a psychiatrist and she basically just wrote me a prescription and said “good luck.” As I continued to scour the internet, I found a blog by Jackie Lea Sommers. Little did I know, she lives in the Twin Cities as well. She has a whole section of her blog dedicated to OCD. It was from interactions with her that I found out about exposure and response prevention (ERP) therapy. I went to Dr. Chris Donahue in Saint Paul for 15 weeks of ERP therapy. It was hard and intense, but I can now say my symptoms have improved by 85 percent. I’ve acknowledged that OCD is something that will never completely go away. When an individual has diabetes, they have to manage their insulin. If a person is in remission from cancer, they still need to go in for check-ups and have an awareness of their body. I view ERP as the tool box that helps me function. I also credit an amazing community of friends, a supportive and loving family, exercise, and medication.

Will you share your “stickiest” obsession with us? Did you have to approach it from a different perspective, or has a tried-and-true method helped?

Gah. Here I am thinking I’ve come so far . . . but I’m still afraid to share my stickiest obsession with the internet. OCD is so tricky. It’s like watching the worst movie you’ve ever experienced over and over and over again.

The website Beyond the Doubt has a short summary of different themes people have.

The main themes that have been present in my life are:

  • “just right” OCD—making sure I said or did something just right, and if I didn’t I replay the conversation or interaction over and over and over in my head
  • thinking I’ve said something blasphemous out loud, asking people for reassurance to find out if I actually did say something
  • fear of harming a loved one, but knowing I would never hurt anyone (harm OCD)
  • sexual obsessions—my entire life I’ve been attracted to boys and then men, but fearing that I’m living a lie (homosexual OCD)

Having OCD is difficult for anyone, but it can be particularly painful as a parent. You’re a new mother–how have you dealt with obsessions and compulsions while adjusting to a whole new lifestyle and set of responsibilities?

I was very open with family and friends prior to having our son. I wanted them to know I was afraid of how this disorder could manifest as a mom. Thankfully, it hasn’t been bad. During pregnancy my symptoms actually subsided quite a bit.  As a mom, things are so busy that I don’t have as much time to give to my obsessions. Parenting is hard, but it’s also been a great distraction. Once in a while I will get “stuck” but thankfully I am able to tell my husband or a close friend that I’m having a difficult time. I also have recognized when I need to have alone time, or do something to recharge. I’ve found that I get really exhausted in large groups where I don’t know a lot of people.

Speaking of family, how did you tell loved ones about your diagnosis and how they can help you?

When OCD first presented itself, I contacted my brother. I think he was diagnosed in high school or college. He was super helpful and encouraging. It also helped to know that I wasn’t alone. After telling my brother, I told my parents. It took me a few months to talk to my husband about it. I think a big thing I was afraid of telling him was that part of the OCD theme I struggle with had to do with him. Over the course of the year when I was diagnosed, I gradually began telling close friends. Then, one night a few years ago, I wrote a post about OCD. It was extremely liberating. It felt like I broke free of chains that were holding me back. Prior to this disorder wreaking havoc on my life, I had so many stereotypes and stigmas of people with mental health issues. I wanted society to know and understand that it could happen to anyone. Family and friends have been wonderful. It’s been beautiful to see awareness spread about this illness and to have people love me through it. My husband, Thom, has been amazing. He’s so calm and loving. I don’t expect him to ever fully understand OCD, but I’m glad he loves me through it. I thank God every day for the support system I have.

You’re the OCD Twin Cities secretary. Why did you want to get involved in a nonprofit dedicated to OCD awareness in your city? 

I felt like I needed to give back to the OCD community. I also have a strong passion for mental health awareness. The late Senator Paul Wellstone said, “We all do better when we all do better.” I believe this is true. We need each other to survive. No one is meant to fight alone. Your story isn’t fully written, and it’s definitely not over. I’ve loved getting to know the other individuals on the OCD Twin Cities board and helping create events and awareness about OCD. It’s so important for family and friends to have ways to support their loved ones as they navigate this diagnosis. I feel like OCD Twin Cities has events for everyone, whether you’re a mental health practitioner, an individual with OCD, a partner, a friend, or a family member.

I’m someone who cares deeply about others and I love helping people find ways to manage their symptoms. OCD can feel really isolating at times, and I want individuals suffering with the illness to know recovery is possible.

What do you consider the most harmful misconception about OCD, and how do you think we can help clear it up?

I think the most harmful misconception is that OCD is such an asset. I had a health provider during a physical say to me, “Your house must be so clean since you have OCD!” I didn’t have the energy to explain to her that my OCD symptoms have nothing to do with cleanliness. I think ways we can clear up misconceptions of any kind is to stop dehumanizing people. It’s so easy to make stories up about people and be fearful of mental illness. One in four people have OCD. It’s as common as childhood diabetes. Your friend, neighbor, pastor, barber, taxi driver, or family member could have OCD. It’s not something that is visible to people. It’s often something that individuals suffer with in silence. I hope and pray that our society continues to create more understanding around all mental health disorders.

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

The piece of advice I would share is: You’ve survived 100 percent of your hardest days; don’t be afraid to get help or admit you are not okay. A whole community is out there waiting to embrace you with loving arms.

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.

Tuesday Q&A: Justin

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Happy Tuesday! If you’ve been reading this series for a while, you won’t be surprised by how I met today’s guest, Justin: At the OCD conference! This past summer I presented about the shame and guilt caused by taboo intrusive thoughts, and Justin was in the front row. We chatted afterward, and he said he wanted to share his personal experience with obsessive-compulsive disorder (OCD). And here we are!

When were you diagnosed with OCD, and how did you know where to turn for help? 

I was diagnosed at age 26, but I can probably trace symptoms back to age 6 or 7. That’s about 20 years of silently struggling. Unfortunately my story isn’t uncommon, as you typically see statistics anywhere from 9 to 17 years from onset of symptoms to appropriate diagnosis.

Because I fused with my thoughts so intensely, I just thought okay, this is how life is, how I am. Life always felt off and full of struggle, but I didn’t know there was something fundamentally wrong with how my brain processed external information. Needless to say, an official diagnosis was accompanied by much relief (along with confusion, anxiety, excitement, and an eclectic mixture of other emotions).

My parents do not have a keen awareness of mental health issues, and never thought anything was wrong. In their defense, I concealed much of my turmoil internally due to shame and in an effort to appear perfect to the world. There was one period of my adolescence when I started to demonstrate violent physical compulsions related to obsessions of mine, but we didn’t know what it was. My mom finally agreed to take me to a local therapist who did a lot of talk therapy with me, tested me for attention-deficit/hyperactivity disorder (ADHD)—test results came back negative, but I guess we stopped there—and referred me to a psychiatrist who gave me medication and hypnosis. The combination of treatment “worked” in the sense that my physical compulsions stopped—but little did I know all they did was morph into mental compulsions. Because I was unaware that what I was doing in my head was exacerbating my condition, the disorder continued to dominate and ultimately snowball out of control.

I continued to seek out different therapists along my journey. Unfortunately, all missed the diagnosis. We did a ton of talking and analyzing, which I now understand only made things worse. What we needed to do was less talking and more exposure. All of the analyzing only kept me in a compulsive rumination cycle.

Oddly enough, along the way I would develop small periods where I’d do research and think to myself that maybe I have obsessive-compulsive disorder (OCD). Unfortunately, the nature of the disorder is such that I even doubted I had OCD because I didn’t have the “classic” OCD symptoms portrayed in the media. So I never truly pursued recovery. I was always in school and continued to pour my energy and time into that and other interests of mine. They all became compulsive—I became a compulsive student, compulsive bodybuilder, compulsive friend, compulsive man of productivity, compulsive “busy” person.

I poured into worldly activities to distract my mind from incessant strife. In reality, everything acted as a bandage to help me get through the years. If I could go back, of course I would stop school for a year and get the help I needed so I could live more effectively, but this is how it was supposed to be for reasons I’ll probably never understand. I’m grateful for entering recovery when I did, and am committed to a life of management from here on out.

It’s nothing short of tragic that the public is so misinformed about this condition and how it manifests. It is up to us now who have struggled to speak out vulnerably, spread awareness, and encourage people that they are not alone in their suffering. This is the pathway to earlier recovery for others.

What symptoms did you experience?

As mentioned prior, when I was younger I experienced a myriad of physical compulsions:

  • violent head shaking to “cancel out” bad thoughts
  • shoe tapping and clothing pulling to get things to feel “just right”
  • adding “I think” or “almost” to everything I said, because I wasn’t 100 percent certain what I was saying was true
  • arranging everything “just so” to avoid causing a fire
  • yelling “that’s terrible” anytime I heard or thought of something bad, or else God would think I wanted it to happen and would make it happen (since I’m that important that the world revolves around my ability to make things happen or prevent them from happening, right?)
  • speech repetition as if others didn’t hear, or to clarify what I originally said
  • various hand motions and facial contortions to get the “just right” feeling

The bulk of my compulsions presented/continue to present in the mental realm:

  • rumination
  • neutralization, or canceling out bad thoughts in my head
  • avoidance (relationships, scary situations, commitment…because if I commit, it’s real and I have to face people who may not agree!)
  • overpreparation
  • mental preview
  • projection
  • catastrophizing
  • magical thinking
  • checking—so much checking. Checking my body to gauge if there’s a sexual response, checking to see if I’m muscular enough, checking to see if I’m enjoying something enough with my partner, checking my “true” feelings about something, making sure I understand every word someone says or during a lecture—the list goes on and on.

I also want to talk a little bit about the dull feeling of depression and anxiety that accompanies OCD. Something always felt off; I could never really enjoy what I was doing because my mind was elsewhere (either in the past, future, or telling me I should be doing something else). OCD dilutes your experience of life, and is highly linked to comorbidities like depression and anxiety. The sad thing is, if you asked me if I experienced anxiety before being diagnosed with OCD, I would have told you no. That’s how poor of an understanding and awareness I had of what was going on internally. A lot of this goes back to my particular upbringing and the lack of psychological education in the school system. This needs to change.

What steps toward recovery did you take once you realized you had OCD?

When I finally received the diagnosis, I truly invested in recovery. I reached a point where I had suffered for so long that I was really ready to just surrender to the process and trust others who have gone before me and improved. This in itself is a process that takes time to recognize, because we’re so used to doing things on our terms and in ways that make us feel good (insert compulsions)—but how has that been working for you? I sure knew it wasn’t working for me, so it was time to listen to people who knew more than me.

Keys to recovery that have really worked for me:

  • Investing in an OCD specialist. Not a therapist who treats OCD sometimes, but an OCD therapist. I am a huge believer in this because of OCD’s nuanced nature. It’s by no means a simple disorder to understand, and you really need someone who understands it well to walk you through it judiciously and diligently.
  • Not being afraid to do the hard work! It’s frightening; ERP is probably some of the scariest stuff you’ll ever have to experience. But it is worth it! What I was doing up until that point was clearly not working. So it was time to listen to people who were smarter than me instead of trusting in my (faulty) ways, which led me astray for so long.
  • Finding an OCD support group. It’s incredibly valuable to have sufferers around you who understand how your brain works and to help you navigate the trenches of recovery. Forcing myself to be vulnerable, even when it’s uncomfortable, has made all the difference in recovery. The more vulnerable I am, the more power is starved from OCD, and the greater connections I establish with other sufferers. Isn’t this what life’s about, anyway? Genuine relationships? You can’t be in genuine relationships when you’re constantly in your head worrying about your fears and “what-ifs.” You can, however, be in genuine relationship when you’re open with your struggles, letting people in to offer love and support.
  • Investing serious time into the recovery process. This likely means scheduled ERP sessions in the beginning when you’re getting the hang of it. I realized if I treat OCD recovery like a part-time job, I’ll experience part-time recovery. If I treat OCD recovery like a full-time job, I’m likely to experience true growth. This doesn’t mean you have to quit your job—it just means you must be efficient with your time. I cut out a lot of sources of distraction to create time for recovery. You’re literally retraining your brain to think a different way. This physically can’t happen if you aren’t creating the time to do so! This process is not easy, and demands respect and time.
  • Reading OCD books! Not compulsively, but it’s important to educate yourself on the nature of this disorder. You have to know your enemy if you expect to overcome it.
  • Listening to OCD podcasts! I started with episode 1 of “The OCD Stories” and worked my way up, about an episode or two a week. This provides an overall understanding of the nature of the disorder, how it manifests, and multiple approaches to treatment. The variety on the show is incredible, and you get to hear from all the top professionals in the OCD world. This resource was instrumental in my recovery.
  • Focusing on being of service! Even when I didn’t feel ready, I went to meetings and reached out to other sufferers to try to lend a hand. Even if you’re just getting started, be someone they can listen to. Offer tips about your journey that will help them in theirs. You are capable of helping no matter where you’re at in your process. Some of the most helpful people along my journey have been those who were open about what they’ve been through, because it helped normalize my experience and diminish feelings of being alone.
  • Building spirituality into my recovery process. I’m beside myself with gratitude for becoming a Christian before being diagnosed with OCD; otherwise, I probably wouldn’t have needed God because I was “doing so much better” with all of my psychological growth. Somewhere along the way I recognized OCD has played a large role in my life, but it doesn’t define me. I believe all disorders, illnesses, and suffering are consequences of a fallen world. It shouldn’t be denied that it affects us immensely, because it does. The disorder is present, no denying that. But on a deeper level, I believe there are also spiritual influences playing a significant role and perpetuating the intensity. I now recognize how important it is for me to approach therapy through a lens of attacking spiritual deficits that underlie the disorder, right alongside specific OCD treatment modalities. For example, the need for certainty, the need for control, and a constant pursuit of perfectionism underlie most of my themes. As I seek to resolve these fundamental issues, I’m addressing all of my OCD at once. When I seek truth about faith, I realize how small OCD becomes and how much grander life is. There are so many better ways to spend my time than obsessing in my head about my themes; maybe they’re true, maybe they’re not—but God’s got me. Merging faith and psychology has helped me experience a more significant, more meaningful, richer recovery—and a more significant, more meaningful, richer life.

Do your friends and family know you have OCD? If so, how much have you shared with them? How did you go about sharing your diagnosis?

This is a tough one, and something I’ve certainly struggled with. When I was just starting, since it was such a transformative time in my life, I felt a lot of anxiety around having to tell everyone what was going on in my life. I was also just so excited to finally understand why I was the way I was, and naturally wanted my loved ones to know too. Now, I’m in a place where I am comfortable sharing it with close friends and family in my life, as it comes up organically (not forced). Naturally, I want people in my life now to know what I struggle with (in the past this wasn’t the case; I was so embedded with perfectionist compulsions that I could never imagine telling someone what goes on in my head. One of the many tangible markers of recovery!), but it shouldn’t be done in a compulsive manner. If you feel a ton of anxiety and pressure to share, it’s probably compulsive in nature. If it comes up naturally and facilitates connection in a one-on-one relationship, go for it! I’ve also found that when I’m vulnerable, it helps others open up about their struggles, which strengthens our relationship.

Have you faced any stigma or judgment? How have you handled it?

Certainly. Most of the judgment I’ve experienced comes from a lack of awareness or understanding by those closest to me, regarding mental illness. Originally, I wanted so badly for them to understand my struggle and truly support me in the process. I realize now how ineffective and unnecessary this is. I can barely understand this confusing disorder, so how can I expect those around me to “really get” what I’ve been through? That’s where having people in your life who do understand and you can commiserate with is really critical. Then, there’s less pressure to explain yourself and confess to everyone, and you can just rest in a place of uncertainty: they may never truly understand, they may never really get what I’ve been through, and that’s okay because it’s not a prerequisite to me getting better or living a full life. This also gets tied up in the idea of overcaring what others think of you (which lumps over into social anxiety but also manifests frequently in OCD sufferers). If you’re designing exposures around caring less what others think of you, naturally you will desensitize to people who don’t understand mental illness and your particular experience. This doesn’t happen overnight and is totally a process (I still struggle with it!).

A lot of people with OCD feel frustrated and offended when they see misleading memes about OCD or hear people say things like, “I’m so OCD about my sock drawer.” Others say we have much bigger issues to focus on, such as access to proper treatment. How do you feel about it? If it bothers you, how do you react? 

I tend to align with the latter approach. It is an ineffective use of our time to get thrown off course every time someone demonstrates ignorance about mental illness. I tend to take the approach of trying to show them compassion, i.e., “Man, I really wish you understood, but I accept the multitude of reasons that you don’t.”

If it is someone I’m close with and the opportunity is there to educate them, I will certainly take it. But I don’t get bogged down trying to proselytize to every individual who misunderstands OCD. I don’t think it would be an effective use of our time, and frankly many people aren’t interested in being educated about it and I can’t change that. While it breaks my heart that they throw the term around loosely, the truth is that they probably don’t know how debilitating a disorder it is and therefore are not trying to be malicious.

What’s one misconception about OCD you wish you could clear up?

Just one?! How about a few?

It’s not about the theme. We get so bogged down with the theme of our obsessions, because it feels so real to us. (“This time, it’s actually true.”) Overemphasis on the content keeps us in the obsessive-compulsive cycle. It’s important to do exposures related to particular themes; however, it is absolutely critical to recognize that our brain is doing the same exact process each time, but it just latches onto a variety of different themes. Why is it important to recognize it’s not the theme? Well, that way we’re not surprised when it latches on to a new theme. Because it will!

Instead, we can recognize “there you are again, my OCD buddy,” and treat it the same. It no longer feels like you have to undergo this exhaustive new process all over again with the new theme. Instead, you respond just like you treat everything else: accept the uncertainty, lean into the fear and anxiety, radically accept your experience, do exposure, and then choose to pour into your values.

Stop trying to experience 100 percent resolution of OCD. This is actually detrimental to your recovery process, unrealistic, and unnecessary. When we seek 100 percent resolution, it makes us perfectionistic about our recovery. It takes us away from being a human who naturally experiences suffering during this life. It creates this tendency to strive for a “perfect, 100 percent happy life,” which only leads to more suffering and unhappiness. It’s this constant pursuit of happiness that ironically makes us less happy.

I don’t want 100 percent recovery. I want management of my symptoms, and the ability to live a full life where I passionately pursue my values. This process, in a twisted way, has been incredibly rewarding. I’ve learned so much about myself and how the world works through treatment, and believe I have experienced more as a result of what recovery continues to push me to do. I’m less afraid of normal things people are afraid of. Dr. Jon Grayson routinely says those who undergo OCD recovery become “better than normal” because of their ability to be more comfortable with uncertainty than the average person, and I finally understand what he means now.

I want to be reminded of my struggle (from time to time, not all the time, okay, brain?) to keep me humble, foster reliance on God, and to help others who still struggle. If I’m totally absolved of this disorder, I’ll get rusty and stop practicing recovery, become less adept at serving others, and ultimately pride myself upon my ability to overcome this rough disorder perfectly.

Besides, I don’t believe it’s possible to experience 100 percent recovery. Maybe it is, maybe it isn’t—I can’t know! But this is our brain we’re talking about, and there will always be traces of symptoms and times we slip back into compulsion. That’s when we take out one of our many tools, apply it, and keep on living.

Thoughts and feelings don’t reflect reality. This is huge for OCD sufferers, and something I still struggle with. Just because you have a thought or feeling, it doesn’t always represent who you truly are. It’s difficult to decipher when it does and doesn’t, so what I’ve found that works with the help of my therapist is that when in doubt, treat it like OCD. Handle it just like you would any other OCD thought: accept that it’s there rather than trying to get rid of it, and move forward with your values. Bring the thought along for the ride and keep going with your day.

I probably know what you’re thinking. Yes, it is difficult to know what your values are when you’re consumed with anxiety. “But don’t my thoughts represent my true values?!” Not always. Trust the process; trust that your values will be revealed to you in time if you’re not clear now.

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

Oh my goodness, friend, you are not alone and there is so much help available out there. We are so fortunate to have a treatment sequence that is proven to help—do you realize how many physical and mental health conditions have no gold standard treatment? We don’t have that problem with OCD. We have study after study that demonstrates how effective ERP is. Do the hard work, and you will see growth. Keep your head up, even on your toughest days. There are better days to come, but the key is resilience. This disorder beats you down day after day and it gets worse before it gets better. It’s super easy to feel defeated and give up. But I promise you were created for so much more than a life built upon fear, anxiety, obsessions, and compulsions.

If you ever want to chat about anything I mentioned or to connect in general, please reach out to Alison and she can connect you to me. I am always happy to connect with OCD sufferers and family members of OCD sufferers.

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.