Category Archives: OCD Conference

Tuesday Q&A: Corey Hirsch

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We’re approaching one of my favorite times of year — the annual International OCD Conference! My guest today, former NHL goalie Corey Hirsch, will be there, not only speaking on a panel about his own experiences with OCD but being presented with the Illumination Award. (Remember the year it went to Maria Bamford and how I definitely didn’t make a fool of myself in front of her? Me neither.) Corey exploded onto the OCD advocacy scene earlier this year when The Players’ Tribune published his essay “Dark, Dark, Dark, Dark, Dark, Dark, Dark, Dark.” It’s beautiful! I kept thinking, “Yes! Me too.” That’s what advocacy can do, let others know they’re not alone and there’s hope. Welcome to our sometimes weird little tribe, Corey.

The International OCD Foundation just announced that you’re this year’s recipient of the Illumination Award, which you’ll accept next month at the conference in San Francisco. What was your reaction when you found out?

I actually started to cry when I found out about the award. To think back to the days where I couldn’t get out of my bed, to getting an award for helping others, it’s so emotionally overwhelming.  I’m thankful and blessed to have had a platform to tell my story, as most do not. I am no different than anyone else fighting the stigma. There are many wonderful advocates and people working in the trenches saving lives. Humbled, appreciative, thankful, there aren’t enough words in the dictionary to describe it.

When I type “Corey Hirsch” into Google, one of the first autofills is “Psycho mask.” Tell us why you chose that helmet.

The Psycho house mask is in the Hockey Hall of Fame in Toronto now. Initially the painter and I collaborated on the Vancouver Canucks colors of the team. They were black, gold and some red, which reminded me of Halloween colors. So the idea was going to be a Halloween theme. Something scary. I can’t remember who suggested it, he or I, but the psycho house came from the Alfred Hitchcock movie Psycho. It was so fitting for how I was feeling inside my own brain that it couldn’t have been a more perfect suggestion.  When I got it out of the box it was almost too perfect. The fire painted in the front was like when you have OCD with the frontal lobe being on fire; eerily, it was almost like the painter knew.  The Psycho house was exactly how I felt in my brain, and that I could hide under it when I had it on.

“Dark, Dark, Dark, Dark, Dark, Dark, Dark, Dark” opens with a scene of you contemplating suicide. What can you tell someone who feels as alone and confused as you did at that time?

First off we need to let society know that talking about suicide does not create suicide. Talk about it and keep talking. Secondly we need to help a person understand that suicide is a permanent solution to a temporary problem and I am proof the problem is temporary. There is help. How it’s so important to reach out if you are feeling that way because when a person is in the middle of it, you can’t see anything else, you can’t see a future, and you need someone else’s eyes and knowledge to help you to find it. In simplest terms it’s like being lost in a forest, and you need a guide to help you out of the forest.

Speaking of that piece — God, I loved it. It was heartbreaking, intimate, and so unbelievably relatable. How did you decide you were ready to share your story in a public forum?

I always knew I wanted to share my story, and I finally felt safe to do so after having a long talk with Clint Malarchuk. He helped me immensely. I also met another person who had the same OCD as I did. His own mother had to resuscitate him after he overdosed. It was heartbreaking. I am very fortunate to not have substance abuse issues, and I didn’t realize there are others out there who are self-medicating almost killing themselves, feeling hopeless. It was time; I am in a good place in my life and I need to let people know they can get there as well. That hope is real.

My obsessions are so personal, I’ve found that telling even one person about them can be difficult. Who was the first person you told, and how did you go about it?

I think my mother was the person I told early on looking for answers, but she had no idea what it was either, or how to help. So eventually I went into hiding and survival mode. The obsessions are still personal and hard for me to talk about, I don’t get into the content of mine, but I do let people know the three categories of Pure O and that I’ve had all of them. I want to educate people on Pure O and I don’t want to miss anyone. So as hard as it is, I feel I have to talk about it.

OCD is hard for anyone, but I’ve never felt that I have to appear stronger than I am, that I shouldn’t show my emotions, that I shouldn’t cry. It must be different for men, particularly professional athletes. Did you feel pressure to remain silent about what you were going through? Have you gotten any flack for sharing your story now?

The locker room is a tough place to have OCD or any mental health issue. Not that guys don’t understand, but there are always 10 guys lined up to take your job. It’s ultra competitive. It’s also why guys hide physical injuries. Societally it’s so much better now, but men have historically been told not to show their emotions. Society over time has taught us that if you cry or show emotions you lose your man card. Thankfully we are in a better place. My story has been extremely well received. If you could see the love and outpouring of support I have gotten, you would never be afraid of sharing your personal mental health story. Society knows it’s a real problem; we all know someone that has been touched by a mental health problem.

What can friends, family, and society in general do to support individuals with mental illness? 

Friends, family and society can help by listening, not judging, and helping encourage the person to see a trained professional. Telling someone how great their life is and they shouldn’t feel that way would only put them in a deeper hole. They already feel terrible enough. If they won’t get help, then it’s important for the healthy person to tell someone they trust or call a help line themselves to get some knowledge on how to handle it.

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

That their brain is lying to them. I always thought why would my own brain lie to me? but it does out of fear. That if a person reaches out, gets help and does the therapy, you too can have an amazing successful life. That you will get better, and you are not weak. Some of the strongest, most amazing people I have met are in OCD recovery. I am not going away, and you are never alone.

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Tuesday Q&A: Morgan Rondinelli

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ocdcon-2015Please help me welcome Morgan Rondinelli to Tuesday Q&A! I loved getting to know her better through her answers, and realized how much we have in common — and not just in our OCD stories. When she included the “fun fact” that she recently declared a minor in writing, I knew she was a girl after my own heart. I hesitate to call Morgan wise beyond her years, but when I was 21 I had none of this figured out. Thanks for spreading awareness and living fearlessly, Morgan!

When were you diagnosed with OCD, and how did you first realize you might have it?

I was first diagnosed at 20, the summer after my freshman year of college, but I am pretty sure I have had OCD my whole life. As early as elementary school, there were weird behaviors I had to do, such as tapping the light switch when I left a room or “knocking on wood” a certain number of times if I thought about someone dying. I knew these were irrational and stressful, but I just accepted them as part of my day. I even remember being aware that my fears changed every couple of years. If a fear was particularly distressing, like the “knocking on wood fear” was, I would just hope that when it switched in a few years it would switch to something less stressful.

As I got older though, I began to realize that maybe my level of stress wasn’t “normal.” I even started seeing a therapist for more generalized anxiety and depression. I don’t think I thought my weird fears and rituals were relevant and something I should mention. My junior year of high school I took AP psychology, and after learning about mental illnesses, I think that’s when I first began to wonder if I had OCD specifically. I even chose to write my research paper on OCD, which was probably an excuse to read more about the disorder. Even after learning more about the disorder, though, and starting to think this was probably what I had, I still for whatever reason kept silent about it.

It wasn’t until I went to college that my OCD got severe enough that I couldn’t remain silent. The stress of moving away from home and taking difficult classes caused my OCD to grow rapidly, especially since I had never learned how to fight my OCD with exposure and response prevention (ERP). I was terrified of my dorm room catching fire, hoarded Post-it notes filled with nonsensical lists, and was unable to read because I would reread so many times, among other things. I started researching my specific fears and OCD again. I read a lot of blogs, probably including yours, and watched several documentaries. At that point, it seemed clear to me that I had OCD; it fit too well. That following summer I asked my mom if I could see a different psychologist and that professional easily diagnosed me with OCD.

I was so relieved to be diagnosed with OCD, but some people feel ashamed and embarrassed to have been “labeled” with a mental illness. How did you feel about your diagnosis?

I was definitely in the camp of feeling relieved. (I wrote this blog post about my thoughts just after I was diagnosed.) Because this was something I had been secretly struggling with for over a decade, learning it had a name, there was an effective treatment, and there were other people who understand felt incredible. Having the diagnosis certainly didn’t take away my OCD, but it did give me hope that I could get better and made me feel empowered to fight back. Maybe if I had been diagnosed when I was younger I would have felt differently, but a diagnosis was something I sought out as the first step to helping myself.

At first, I was shy about revealing my diagnosis, even to close friends. I don’t think it’s because I thought they would react badly, but because I didn’t know how to even start explaining it since I had done such a good job keeping it a secret. With practice, I have become more comfortable sharing my diagnosis and story. Today, I feel next to no shame about having a diagnosis of a mental illness. It truly is just an illness, probably caused by a mix of my genes and the environment I grew up in, so I don’t view it as different from any other illness.mental-health-monologues-2015

With a blog of your own as well as features on The Mighty, speaking events, and videos, at age 21 you’re already a recognized voice for individuals with OCD. How did you get into advocacy? Did you expect to be heard so quickly?

Oh gosh, that’s weird to hear someone as prominent as yourself call me a recognized voice for people with OCD. But to do my therapy homework for the week, which is practicing aligning how I see myself with how others see me as competent, thank you!

I started my blog shortly after I was diagnosed with OCD, and that was probably my first step into advocacy. Really it just started as a place to express myself after keeping all of these thoughts and fears secret for so long. I hoped other would read it, but I didn’t mind if I was just writing for myself. Gradually though, I became more interested in also using my writing for advocacy. I started sharing my blog more widely and looking into other places to publish essays or speak.

Around the same time I started my blog, I also got involved with mental health organizations on my campus. My first big involvement was speaking in our first ever Mental Health Monologues show about OCD. Since then, I have stayed involved with several mental health clubs on campus and now direct the Mental Health Monologues show. I love being able to write for different websites and reach individuals with OCD, or people who just want to learn more about the disorder, anywhere in the world. But there is something powerful about speaking and advocating in your own community, and meeting other advocates on campus.

One of your posts I really identified with — and I identify with a lot of them! — is Why it’s tricky to joke about OCD. Not to toot my own horn, but I have a great sense of humor. I love to laugh and to be goofy and I feel uncomfortable around overly serious people. But I cannot get on board with jokes made at the expense of OCD sufferers. What prompted you to write this particular post? Have you ever called someone out for making light of OCD, and if so, how did that go?

What prompted me to write this post was how many times I have heard or read people saying people with mental illnesses just need to take a joke and learn to laugh at themselves. The thing is, I do laugh at myself and about my experiences with mental illness. A lot. But the difference is underneath it all, I know just how serious and painful OCD and other mental illnesses truly are. Whereas, I don’t think most people joking about the disorder really grasp how bad it can be.

I think about this especially when I am in my worst moments with OCD. I am vastly better compared to when I was first diagnosed, but I still have OCD and there are still times when I get quite stuck. To go off on a tangent, the most recent example was this summer, when I came home from taking classes at my school’s biological station. I had gotten little sleep, taken an exam that morning, and then rode several hours home, all of which are the prefect recipe for OCD. When I got home, I learned a pipe had burst a few weeks ago and water had gotten in our basement. To keep my college stuff (which of course I kept in the basement) from getting damaged, my mom had to move it. For most people this might seem inconvenient or even a little stressful. But for someone with OCD, small things can be very big things.

I still have a massive fear of people touching my things and rearranging them, especially if things are placed in multiple rooms, rather than all together. I am irrationally terrified that something will get damaged or lost. When I got home and saw my stuff, I was completely flooded with anxiety and had a breakdown. I ended up curled in a ball on the floor in between piles of my stuff, sobbing for about three hours. Once I could move again, even though I was exhausted, I ended up staying up late carrying boxes around and reorganizing all my stuff. It’s hard to describe just how overwhelmed and stressed I was about this, and about things as simple as one pair of shoes being put in one room and another being put in the room next door.

I wish people who joke about OCD could see moments like this. Most of the time I am a normal-looking, high-functioning individual, but not when OCD is hitting hard. If they could see these moments and how serious and painful the disorder is, I don’t think they would ever joke about OCD again.

When I joke about the disorder, I’ve lived through these moments. I know they are the reality. I think it’s that knowledge of how bad something can be that makes it okay to joke about it. On a similar note, I’m not bothered when someone like my psychologist jokes about OCD. He treats countless patients a week and, again, knows how debilitating and painful the disorder can be. I know he knows this and empathizes with his patients, considering he is spending his whole life treating the disorder, so I can laugh and joke along with him in those contexts. It’s that underlying understanding of what OCD really is that make it okay to use humor to cope.

The other large reason why jokes about OCD bother me is the simple fact that it perpetuates myths about the disorder and increases the time it takes before individuals who actually have OCD get diagnosed and treatment. I like to hope that if society jokes about OCD less and instead has a better understanding of what the disorder really is, the gap between onset and diagnosis will decrease, which only increases someone’s prognosis of recovering.docc-conference

Did you have any hesitations about sharing your story before you started your blog? What has the response to your advocacy been like?

I definitely had some hesitations at the start, and originally used a pseudonym on my blog rather than my real name. My main concern was that when I go to apply to graduate schools, someone will see it and it will negatively influence their decision. At this point though, over two years into writing and speaking publicly about OCD, I’m pretty much an open book. That might be because responses have been overwhelmingly positive, from both friends and strangers. It especially makes it worth it if I see someone found my blog by searching their symptoms or tells me something I wrote helped them, just as others’ blogs helped me. I’m glad I can give back to others just figuring out their own OCD.

As for graduate schools, I’ve decided if a school doesn’t accept me because I speak openly about my mental illness, then that isn’t a school I want to attend anyway. I want a school that values and supports the mental health of their students, and a campus that has open conversations about mental health.

For me, writing and speaking at conferences about my OCD has been like ERP because (a) public speaking has always made me really nervous and (b) I hid my obsessions for years and years. Have you found your advocacy to be beneficial to your mental health?

For as shy as I am in person, it might seem weird that public speaking doesn’t make me uncomfortable. I think it’s like when I dance; I’m a completely different person when in front of an audience and “performing.” So yes, I do find writing and speaking about OCD beneficial to my mental health. It provides a great outlet for me to express things I might have otherwise kept to myself for another decade. Writing, in particular, tends to boost my mood and I always feel better after I write. One of many reasons why I have just declared a minor in writing!

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

If possible, find a good therapist who knows ERP. Expose as much as possible and make uncertainty your best friend!

Tuesday Q&A: Producers of UNSTUCK

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday Q&A: David Adam

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This Tuesday we’re hearing from David Adam, author of The Man Who Couldn’t Stop, 2015 recipient of the International OCD Foundation’s Illumination Award, and 2016 OCD Conference keynote speaker.

I’ve had several different themes of obsessions, and many people I know who have OCD do, too. David struggled with just one, a fear that he’d contract HIV/AIDS, and maybe you do, too. It’s another reminder that OCD is crafty and takes on many forms, but no matter what forms it does take, it’s treatable.

Your keynote at the OCD Conference was titled “The Accidental Advocate”—you said you never expected your book would lead to speaking at schools and answering emails from others with OCD. What was your purpose behind writing the book?

To tell what I thought was a great story. The more I researched and read about OCD and the science and the history, the more I got the sense that there was something in it that people would want to read. And then the journalist in me kicked in and said that I wanted to write it all down before someone else did!

The Man Who Couldn’t Stop was a little different from other first-person narratives in that it included an in-depth account of the history and science behind OCD. Why did you want to write about OCD in this way?

That was the stuff that I was most interested in. The personal narrative stuff almost came later in the writing, as a way to stitch all the material together and to provide a narrative structure. Books, I have learned, are all about narrative structure!

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Writing and speaking about your OCD helps people with OCD feel less alone, particularly those who relate to your AIDS-related obsessions. Has being open about it helped you as well? 

Yes, it’s helped with the indirect harm that was caused by previously keeping it (or anything that central to someone’s life) secret. But it hasn’t helped with the actual symptoms of the OCD, and why would it? If only it were that simple.

During your keynote address, you mentioned that while many people have told you you’re brave for sharing your story, you think young people taking on advocacy are the truly brave ones. Why did you say that?

Because to an extent I have little to lose. I am in my 40s, have a wife and children and a job. I think it’s brave to confront a situation like OCD head-on when you know that it could follow you around—when one goes for the job, for instance. And because it takes guts to do so rather than try to pretend it wasn’t as serious as it was, which I did as an excuse not to get help.

Although you didn’t mean to become an advocate yourself, do you have any advice for my readers who want to get into advocacy themselves?

One reason I was hesitant is simply because there are plenty of organizations who do it so well, and who would welcome help I am sure—just Google your local OCD charity or help group!

OCD kept its grip on you for many years, but it wasn’t until after you became a father that you became serious about addressing your obsessions and compulsions head-on. Can you tell us more about that?

I simply didn’t want to do anything that would make my daughter (at the time, now a son also) more likely to follow me and to develop OCD. And after I started to involved my daughter in my own OCD thoughts and rituals, then that was the push I needed.

What do you consider the biggest misconception about OCD?

That’s it’s about behavior. It’s a pathology of thought. And that is what makes it so difficult.

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

Tell someone, a friend or family member. And then realize it’s a medical problem that probably won’t go away without medical help.

Tuesday Q&A: Sean Shinnock

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SeanArtIt’s the Tuesday of OCD Conference week, and I’m excited to be hosting someone you’ll have a chance to meet, learn from, and be inspired by this weekend. Sean has taken huge leaps in his recovery in the past few years, moving out of his dad’s house to residential treatment in Boston to living on his own and taking life by the horns—working full-time, pursuing art, and not taking anything for granted. I love his take on mindfulness, self-compassion, and personal growth, and I think you will, too.

Like so many other people with OCD, it took years before you realized what was really going on. You were diagnosed in 2012, but you’d had symptoms long before that. How far back do you remember having obsessions?

I remember having obsessions all the way back to when I was 10 years old, maybe younger. I worried constantly about my mother’s health and global warming!

What led you to finally seek help and get a diagnosis?

The spring after I turned 32, I had gotten to the point where I was everything but catatonic. I couldn’t leave my chair, my room, my house. I would stay still for hours locked in obsessions, ritualizing to get out of them. During any periods of rational thought or normalcy (I jokingly called these times my “awakenings,” a term I took from a Robin Williams movie I enjoy), I would either ponder suicide or fantasize about finding a magic cure. I finally succumbed to my very really desire to live, and asked my dad for help. I didn’t know what to do, but I knew that I  had to do something, anything. We eventually made an appointment for an intensive two-day neuropsych evaluation at the Lindner Center of Hope near Cincinnati, Ohio, about 120 miles away.

Once you knew it was OCD, how did you feel? Were you comfortable sharing your diagnosis with loved ones?

Honestly, I didn’t have much of a reaction,  I had done research and knew what OCD was and even kinda self-diagnosed myself in high school after watching a daytime talk show from the ’90s with a kid on it with OCD. What was really going through my head was: A) OK, now what, I have an official diagnosis, there is no way I can afford therapy, and it probably won’t work anyway.  B) I hope my dad now understands that all my failures weren’t all my fault and C) They missed something, I have something worse, I’m psychotic, they don’t know what is really wrong with me (this was my OCD talking).

I am fortunate with the friends and family I had when I was first diagnosed, so talking to my close loved ones was not a problem and I received a lot of support from them. It was the community outside my inner circle that I always felt awkward or shameful around. As my confidence grew and as I got better and better, I became more at ease talking about my struggles with more and more people. I really do like the chance to compassionately teach someone about OCD and mental health awareness if they are having a hard time understanding it. 

SeanBoston

You eventually went to residential treatment at McLean in Boston. How did you decide to take this step?

I had told myself when I first started down my path of healing, that I would do whatever it takes to get better. So there was no way I was going to take a recommendation from an OCD expert home with me and just sit on it. I was really open to any suggestions of treatment and had mentally prepared myself for treatment. With the initial formal diagnosis from Dr. Charles Brady at the Lindner Center, we were told that my case was so severe that even the Lindner Center’s own OCD residential program was probably not enough and that I would most likely need a more intensive, longer stay at a larger hospital. When my dad and I were suggested some programs that were known nationally, we began to do some research. We finally came to the decision for me to attend the OCDI at McLean Hospital in Boston, Massachusetts. Again, for me, the decision to get intensive treatment was not all that hard to make. I was really scared, I was filled with uncertainties as you could probably guess, but I had been through so much, I was at my worst, I was willing to do anything to get my life back.

Residential treatment can be really beneficial for some people, but it can also be difficult to transition back to daily life. How did you maintain the progress you’d made after you left McLean?

One of the hardest things that I have had to do, and I assume that this is hard for other “warriors” (term I use for those on the path of healing), is planning to discharge from a residential facility (sometimes called aftercare work), and then transitioning from residential life to the realities of the real world. The recipe for maintaining progress is a very complicated, multi-layered, and subjective experience for each resident. I attended the OCDI twice, once in 2012 and then again for the winter of 2014-15.

Each stay, in my eyes, was completely successful, and changed my life in its own unique way. The first stay, my team and I really focused on getting myself mobile again by attacking the obvious, more visible rituals I was struggling with. The second stay, my team really got me acquainted with acceptance and commitment therapy (ACT) and mindfulness on a more personal level and I got a chance to do a lot more expressive art therapy. By doing this, I was able to give more to the existential, big picture and personality-driven obsessions that I was really struggling with at my core. So, with that being said, I had two different experiences transitioning to the real world. The first time I left residential treatment I had come a long way in my therapy. However, due to not having the proper resources in my hometown and having some life curve balls thrown at me, the issues that my team and I were not able to address during the first stay escalated and got worse.

The real story, though, is how I handled the transition my second time around. This time, I was dead set on doing well outside of treatment and I set myself up to do so. In addition to the exposure and response prevention (ERP), ACT, and mindfulness therapy I received at the OCDI, I really started working on my systematic problems with “perfectionism” and self-confidence. I began to view my thoughts in different ways and I started to allow myself to become less rigid in how I achieved my goals. By ditching the “fixed” mindset I had carried with me most of my life, and by developing a “growth” mindset, I was able to keep the momentum I had built during therapy and continue to heal while navigating the peaks and valleys of real life. In my case, my ultimate exposure was indeed life. So, in order to really transition well and grow the way that I needed to, I had to make some tough decisions. I had to expose myself to taking risks and living life on my own. I knew that the only way that I was going to grow and become wise was to have the life experiences therapy had prepared me for. It made no sense to get therapy and then avoid my fears by going back to the same situation that I was in.

So, the last two weeks of my residential stay, I started to look for people who wanted to sub-lease their apartment in the dead of winter. I applied to over 20 places for employment, and I was adamant about keeping my behavioral therapist that had helped me so much. The therapy part was very important to me because I had grown tired of dealing with BTs who were sub-par or who did not understand my case. I felt I deserved better, and this was the only area I stayed pretty rigid on. So, by the last day of my treatment I had found an apartment, I got a low-level part-time job, and I had my therapist.

On March 1, 2015, I had officially moved from Ohio to Boston. In order to make this transition work, I decided that I had to make promises to myself and then actually keep them. I knew that I wanted to fill my calendar and stay busy because I knew that if I was bored or static I could start getting back into my head. I promised myself to work 40 hours a week, and I did. I promised myself I wouldn’t miss any therapy appointments, and I didn’t. I promised myself I would volunteer, and I did, and then I promised myself I would take my art to new levels, and I did. I kept pushing myself to do the things that were valuable to me and that would be productive in my life. I quit drinking and I started to save my money. I attended meet-ups and even ran a figurative art night. I attempted art projects that I would have initially avoided, and I continually set daily and weekly goals for myself. In general, I knew that I had big-picture ideas, but the only way that I was going achieve anything was to take small baby steps and build a path of confidence filled with small victories and lessons learned by mistakes. By adhering to this philosophy I was able to overcome setbacks more easily and calm down quicker when I panicked about not being able to handle what I had gotten myself into. As I progressed, I noticed that the valleys became less deep and the peaks were more attainable. Transitioning can be tough, but by continuing to hold yourself accountable, the life you want can be within your reach. I would like to add, though, that my transition was really made possible by my support team, which includes my family, close friends, and therapists. I have been very fortunate with that. 

TeddyBearSean

You once told me that ERP is great, but you found ACT to be even more helpful. Tell us more about that. How does ACT work?

ERP really helped throughout the entirety of my therapy; however, what has really made a significant impact on the core of my thought processes has been ACT. ACT is a therapeutic model based on mindfulness and Eastern philosophies, and it has really challenged me to change the perspectives I’ve had on my thoughts. Instead of struggling with my thoughts and negative emotions I learned that I had the power to give them meaning. I learned that I could have compassion for these thoughts and view them as exactly what they were, just thoughts entering and exiting my mind. I started to allow them space by using a technique called “expansion” and I started to not judge them by ceasing to give them attention. ACT has really helped with my own self-confidence and has really allowed me to make strides in my own personal growth.   

We’re presenting together at the OCD Conference, on a panel about taboo intrusive thoughts. I’ve had other types of obsessions, but I found the taboo thoughts the hardest to get over. What can you tell us about your intrusive thoughts and how you’ve handled them?

I have struggled with intrusive thoughts my entire life and they probably started before I was even a teenager. The content of my intrusive thoughts has changed and evolved throughout the years but has primarily been centered around harm, sexual deviance, homosexuality, scrupulosity, and fears that I may be a sociopath. For twenty-two years, as you may have guessed, I handled the thoughts the only way I knew how, and that was to perform physical and mental rituals or to just flat out avoid certain situations. But as I have gone through therapy, I have been able to view my thoughts in a different way: I am not my thoughts. I have the power to give my thoughts meaning. Everyone has these thoughts and because I’m human, I have these thoughts. What also has had a large impact on me is being part of a community that has had the courage to stand up and talk about their experiences with this disorder, which, in turn, has allowed me to feel welcome and warm and supported and above all else, not alone.  

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You’re holding an art event at the OCD Conference,on Friday night, called Draw Your Monster. Why should conference attendees come to this activity? What can they expect?

Draw Your Monster will be a fun activity that you can just drop in on and come and go as you please. It is 7 p.m.-8:30 p.m. on Friday night in the Denver/Houston/Kansas City rooms. It is an art activity based on some of the principles I love to talk about, ACT and mindfulness. It is all about acceptance and the commitment to change your perspective on fear with a fun and unique twist. There will be fun stickers to take home with you and a small raffle toward the end. You will receive your own monster lanyard, and if you choose to, can challenge yourself to wear it the rest of the conference. I really wanted to do something creative and expressive, and I wanted attendees to have fun while exposing themselves to their unwanted thoughts by drawing them as monsters! I think expressive art therapy is critical in making people look at the things they are struggling with in new and creative ways. Someone who may not know how to express themselves verbally can now take the chance to overcome fears through art and mindfulness-based experiences. It is so critical for people to learn to overcome their fears by allowing themselves to grow and heal in a way that won’t exhaust them the way that mindlessly struggling with them will. I think that “Draw Your Monster” can be a catalyst for people to start to change their perspectives in a compassionate way. Think: “I will allow my monster to take a seat on my bus; however, I am the bus driver and I will decide where we go.”

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

Remember your “Big Picture.” Embrace uncertainty. Open your mind to the “grays” in life as there is no back and white. Remember that you are not alone. Don’t be afraid to ask for help. Be open with your thoughts and emotions. Remember to treat yourself well. Notice that you are human. Do research and ask questions. Force yourself to stay present. Be compassionate. Take risks. Accept love.

That obviously isn’t just one, but all need to be said.

Tuesday Q&A: Tim Blue

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TimandWifeTim Blue and I met the way I’ve met so many of my incredible “OCD friends”—at the national conference the International OCD Foundation puts on every summer. (Seriously, you should go!) He’s such a nice guy, and we have a lot in common, which is always refreshing. In fact, that’s kind of the idea behind his blog and Facebook community, To Know We Are Not Alone: There are others out there like us, so let’s help each other! Let’s not suffer in solitude when someone else with OCD is right there on ye olde Internet ready to chat.

You have a great blog—and also a Facebook community—called To Know We Are Not Alone. How did this come about?

Frankly, my blog came about because I battle intense loneliness, especially in regard to my mental illnesses. I’ve found that people who are mentally ill tend to either keep it to themselves or keep to themselves. It’s very hard to find people who truly understand. I originally intended that the blog would become a forum for community. It has, but only to a very small extent. I guess it has served to help me find people who appreciate what I’m doing, but I don’t think it has done much to help others find new friends. I’ve decided to take the next step with it and move toward forming a nonprofit that aims to educate and encourage, but once again, I’m very hopeful that I will figure out a way to help other struggling people find each other.

Tell us more about why you decided to start a nonprofit. Do you have anything in the works?

The truth is that, over the past few years, I have found myself unable to sustain a go-into-the-office-every-day sort of existence. I’ve had to turn my attention to my mental health in ways that mean radically altering my life. But at my core, I love connecting with people, helping people, teaching people, etc. The reason I’d like to take the next step is that I find myself at a crossroads in my professional life, and I can’t think of anything I would rather do than to turn my passion for writing, teaching, and speaking into something that might (fingers crossed) grow into something bigger than just me writing my blog. I’d like to get others involved, and I’d like to expand the resources I offer, and starting something official seems like a good next step.

Why do you think knowing we’re not alone is so therapeutic?

When I taught high school English, I used to periodically ask the question, “If you could live forever, would you want to?” The first question was always, “Would my friends and family live forever too?” When I told them “no,” about 90% said they wouldn’t want to live forever. I suspect the other 10% would eventually regret it, too, because I think that human beings are “herd animals.” I can’t speak for others, but I know that I have battled a fierce loneliness my entire life, and I’ve always looked for ways to find out if others are thinking like I think or feeling like I feel. When I find someone who really understands my idiosyncrasies and oddities, it’s like getting a new lease on life. I don’t know exactly how it all works, but I think quite simply that our hard-wiring is for being in a group, and that requires not just physical presence but emotional, mental and even spiritual connection.

BlueFamily

Your blog fulfills its mission: You do a tremendous job at helping people with mental illness—and their loved ones—feel less alone, and that’s because you’re candid. I know how hard it can be to be so open about something many people consider embarrassing or taboo. Did you make a conscious decision to be so transparent, and did it take a while to get to where you are now?

What a great question! I don’t remember making a conscious decision, but I spent over 30 years hiding my struggles from everyone. Those closest to me knew I had my quirks and anxieties, but we never talked about it, and I never pursued professional help. I guess eventually it sort of just burst out of me—first in the form of a self-published book and then in the form of the blog. It took so much energy to pretend that I just couldn’t (or maybe wouldn’t) do it anymore. I’d call it more an act of desperation than a conscious decision. But I wouldn’t go back to faking it for anything.

One of the things you’ve been candid about is self-harm—you’ve cut yourself at times. What would you tell someone who’s never done this and doesn’t understand why anyone ever would?

I could talk for a long time about this subject because it’s so misunderstood. I remember in the past, seeing students with the obvious scars from cutting themselves on their forearms. I didn’t understand it at all, even after I had been diagnosed with OCD and depression. Then…and I’m going to share something I’ve never shared openly…I had an experience that led me to understand self-harm. A family member and I had had a very rocky relationship for over a decade, and one day I decided to text him to see if we could try to talk things through. What came back was an onslaught of hatred unlike anything I’ve ever experienced. He accused me of faking my mental “issues,” said my wife and kids would be better without me, and told me he’d heard through the grapevine (despite living 1000 miles away) that the employer I had recently left due to depression was glad to finally be rid of me. At the time I had given up drinking, but that night I took it back up in earnest, and later that night, well past midnight, I sat there drunkenly feeling like every fear I had about myself and my worth had come true. It felt like this relative had spoken for everyone, and I wondered if what he had said was in fact true. There was no conscious decision to do this, but I was in so much emotional pain that I took out the pocket knife from my pocket and just started digging the blade into my arm. Rather than hurting, it sent a wave of relief coursing through me, and I kept going. Eventually, over half of my forearm looked like a rabid cat had decided my arm was the enemy. After I had done this once, it started to become a somewhat natural reaction to the emotional pain I felt, and I did it many more times (and I’m not saying I’ve done it for the last time either, if I’m being honest). Eventually, I came to find out that the reason people do this isn’t a cry for help, as so many assume. It’s actually basic chemistry: For some reason, when one is in intense psychic pain, physical pain actually releases chemicals in the brain that bring release. As I understand it, it’s sort of like a drug high in terms of how it relieves one’s brain. I’ve gotten so I can actually test how depressed I am by how appealing self-harm is. As I sit here now, it holds absolutely no appeal. I just think, “Ouch!” But when my brain gets turned upside down, so does the appeal of hurting myself.

As you might know, my blog is primarily about OCD because OCD is my primary diagnosis—so let me ask a few OCD-specific questions. How did you first realize you might have OCD? And once you were diagnosed, how did you go about treating it?

OCD is also my primary diagnosis. I wasn’t diagnosed until I was 25, but I remember symptoms from my earliest years of life. Growing up, I was just aware that I was more anxious that others, so I just thought of myself as anxious, not obsessive. Finally, in my 20’s someone mentioned that I should look into getting medication for my “anxiety,” and I reluctantly went to a psychiatrist. He diagnosed me within about 12 seconds with OCD. It was that obvious to him, and looking back, I can see why it would be so blatant to someone who knew what to look for. Like many, I was a reluctant patient for a while. I went on and off of meds, not to mention starting over and over with various doctors, for years. I resisted the idea of medicine and thought that eventually I would just figure out the magic cure. It took a breakdown that landed me in the hospital before I finally surrendered and starting working on my symptoms in earnest. Thus far, I have found medication quite helpful as well as mindfulness meditation, which, to me at least, seems very, very similar to exposure and response prevention therapy. Both involve accepting one’s situation just as it is, and that, oddly enough, is the key to a healthier view of the world you’re living in.

Can you tell us more about your obsessions and compulsions? Are there any that seemed more stubborn than others?

My obsessions and compulsions have gone through various phases. As a kid, I went through a couple of years of germophobia, washing my hands incessantly and so on. As an adolescent, my hyper-religious upbringing brought on a severe case of scrupulosity: I was convinced that every thought and action was somehow tainted, that I wasn’t really a Christian, so I would say the sinner’s prayer (asking Jesus to save me from my sins) literally countless times a day. I also had magic numbers to ward off the devil. Later in my teen years, my obsessions took on a sexual nature. I had been raised to remain a virgin till marriage, and like any other teenage boy, I put a very high value on sex. But I became convinced that I would be impotent once I could finally have sex. The incessant “checking” involved all sorts of things I won’t detail here, but I was never without the fear that the one thing in life I wanted most—sex—would be stolen from me by impotence. Finally, my obsessions have taken on the form of relationship OCD. Basically, I can’t quit evaluating or questioning my relationship with my wife. We’ve been married 13 years, but I still examine our relationship as if we are dating and thinking of marriage. It’s truly torture because I’m made and remade this decision so many times, and I’m committed to my wife and kids, so I know it’s a useless question. But it won’t stop hammering my brain. There’s never a moment I’m not evaluating and re-evaluating my relationship with my wife. If I’m with her, everything she says, does, wears, implies, etc. becomes part of this pile of evidence in my brain about the state of our relationship: Is it as good as it should be? What is my level of attraction to her at this moment? Am I in the right relationship? Even when we’re apart, I might look at others’ relationships and compare them to my own or look at the way some other woman does something and compare it to how Ann does the same thing. As you know, it’s torture. I’d give anything to make it stop; I know it’s illogical, but I can’t turn it off. Even in the middle of the night.

Compelled

Your book, Compelled: A Memoir of OCD, Anxiety, Depression, Bi-Polar Disorder, and Faith…Sometimes, discusses your Christian upbringing and how it affected your mental health. Specifically, instead of your struggles being as symptoms of a mental illness, they were seen as spiritual failings, as a lack of faith. This is far too common in many faith communities. How did you finally break away from that and get the help you actually needed, beyond prayer?

Wow. This one is huge. What would I give to have the hours back that I spent praying or worrying that I was not in God’s will?! When someone gets cancer, we consider them crazy if they refuse treatment in favor of just trusting God. But with mental illness, we are still pretty far behind in this regard. Until people see mental illness as every bit as “real” as a broken leg, we won’t be able to fully solve this problem of people thinking prayer can heal your OCD. Our friend Chrissie Hodges, who works with mentally ill patients all day, said that almost to a person, people’s various mental instabilities have something to do with religion. I also recently heard a statistic that something like 45% of evangelical Christians think that mental illness can be cured through prayer alone. For me, I still live very deeply entrenched in a community/social circle of evangelical Christians. I have people tell me almost every day that they are praying for me. Within the mental health community (counselors, groups, doctors) I think religion should be pretty much off limits. I’m fine with people telling others that if they have a faith tradition that they find helpful, by all means embrace it. But to me, when someone pushes their religious ideas on you, it would be just like me telling you that you need to take the same medications I’m taking. Obviously, that’s ridiculous. But with religion, that’s what people do because they believe they’ve found “the answer.” Religion helps a lot of people, but they need to be extremely careful about how they share that with others, because religion has also probably done as much damage to people as any other entity in history other than maybe the abuse of sex. These days, I am very much of the belief that one should evaluate for him/herself what is helpful and go with that. Meditation helps me a lot. Certain medications have helped me a lot. Meeting with friends who just listen and don’t prescribe helps me a lot. Maybe prayer will help Bill and nature hikes will help Sally and yoga will help Susie. We need to encourage each other to keep taking the next step, but we shouldn’t tell them exactly what that step must be.

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

I would give them the same advice I give myself: give yourself grace; you are fighting a very hard battle. Don’t berate yourself for something you can’t control. All you can control is whether or not you keep trying new things to see what might help. Don’t expect to get a magic cure. Try to find things that will help you take a small step forward. For me, Mindfulness Meditation has been a helpful step. For you, maybe it will be smoking cigars (that’s another of mine too). But I don’t want to tell you what will help you. There’s a lot out there. Just try something. Determine what a reasonable time frame is and if it’s not working, find the next thing. And find friends! And when you find them, introduce them to me, because I need them too!

Tuesday Q&A: Michael Jenike

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IMG_2367[1]In 2014 I attended my first OCD Conference, and I kept hearing snippets of conversation about this man, Dr. Michael Jenike. It was “Jenike this” and “Jenike that.” I finally asked my hotel roommate who Jenike was. “You haven’t met Jenike?!”

In 2013 Dr. Jenike had granted me permission to use his very helpful checklist for finding an effective therapist in my book, so when I met him at the 2015 conference, I thanked him. After all I had heard about him, I thought he’d have an intimidating, scholarly presence. Nope. Not so much. He said, “Where’s my cut of the royalties?”

Dr. Jenike is brilliant, yes, and he’s helped countless people gain control over OCD. But he’s really goofy, too. Going to this year’s conference in Chicago? See for yourself.

You’re kind of a big deal in the OCD community. You founded the Obsessive-Compulsive Disorder Institute (OCDI) at McLean Hospital, a world-renowned residential treatment program. How did that all come about?

After treating thousands of patients for a number of years, we realized that some patients did not improve despite medications and behavior therapy. I thought that perhaps a residential OCD facility where patients could stay for long periods of time might make a difference. We planned to do the same treatments, just for a longer period of time and more intensely. McLean OCD Institute has now been open around 20 years and the demand for services has not let up.

When you decided to go into psychiatry, did you know you’d end up treating OCD? If not, when and how did you decide to focus on this particular disorder?

I had no idea about OCD. In medical school I had a classmate who would miss many classes because he was in the bathroom washing his hands. I had no idea why he was doing that. I was going to be a surgeon and planned on going to Johns Hopkins for surgery. In medical school I had an inspiring teacher, Dr. Ronald Krug, who thought I would like to take a psychiatry elective with a local psychiatrist. This was an amazing experience and I could see that if you were aggressively working to help people with real expectations that many got better or improved markedly. Prior to that elective, I mostly saw psychiatrists as talkers and not result oriented in medical school. I was always a results oriented sort of person, thus my interest in surgery. However, there were some awesome psychiatry lectures in medical school and I thought it would be great to learn psychiatry, but I had no intention of becoming a psychiatrist. I asked the doctor in charge of the elective and Dr. Krug where the best place to learn psychiatry was, and they said Massachusetts General Hospital (MGH). I applied and was accepted for training and finished up there and stayed on the faculty ever since.

While in residency at MGH I saw a few OCD patients and was fascinated with these patients who would do crazy and seemingly purposeless rituals for hours despite being totally sane. They were really nice people but they were suffering as much as anyone I had ever seen. I was always interested in lessening people’s suffering so this intrigued me. Also, the total lack of knowledge in my supervisors about OCD was astounding. No one thought they could be helped. OCD became my hobby. During these early years of my career, I ran the MGH inpatient psychiatric department and founded and ran the MGH dementia clinic for about 15 years. I mostly published in geriatrics and dementia with occasional OCD papers. We thought OCD was very rare. Out of the blue, the Larry King TV show called me and wanted me to go on the show with an OCD patient. Their request was for me to discuss where you could shoot yourself to improve mental illness. There had been a report of a young man with depression and OCD who shot himself in the front of his head and he recovered and his OCD and depression were gone. After that, we got over a hundred calls a day for a long while. The OCD disorder that we felt was very rare was obviously not uncommon. Soon after a large study came out showing a prevalence of OCD of over 1 percent of the population. With the onslaught of OCD patients I gradually shifted to mostly doing OCD clinical work and research. Over the next few decades we branched into all kinds of clinical trials, genetic studies, neuroimaging studies, and innovative treatments. The staff grew to over a hundred people, and we now have a huge clinic at MGH headed by Dr. Sabine Wilhelm that specializes in OCD and also related disorders like body dysmorphic disorder, trichotillomania, Tourette syndrome, et cetera.

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You contributed to Life in Rewind: The Story of a Young Courageous Man Who Persevered Over OCD and the Harvard Doctor Who Broke All the Rules to Help Him. That’s a long subtitle—did you really break all the rules, and did doing so change the course of OCD treatment for generations to come?

I don’t really worry about the rules if they get in the way of patient care. I was told when I was in training that psychiatrists are not allowed to make house calls but my patients were stuck and could not get out of the house so I saw no other way. I don’t break rules just to break them (I hope). It seemed silly to have a nonsense rule that prevented very ill patients from getting help. We have systematically set up a group of master’s-level clinicians to go into people’s homes to treat severely ill patients. I do think this is a model for the country but funding is a problem. I have gotten around this by very generous donations from a few people that allow me to pay these clinicians well to do this work. I still spend much of my time out of the office seeing people on their turf. I find this fun and exciting, and the results can be fantastic. Ed Zine, the person in the book you mention, is doing great. He has two teenage daughters and a wonderful wife. He has gone back to school to become a therapist and wants to help OCD patients. He will talk to patients on the phone to help motivate them. Could anything be more rewarding?

Jeff Szymanski said he credits you with setting the tone of the annual OCD Conferences because you were always willing to answer questions after your sessions—once for 12 hours. I’ll quote him here from the wrap-up podcast he did after last year’s conference: “If you see Dr. Jenike, shake his hand. He really set that norm of, ‘You’re here, you’re working, you’re going to be generous.'” Did these early experiences surprise you, or did they confirm what you already knew, that people desperately needed help and resources for OCD?

That was always my style. I gave the keynote talk at the Boston annual conference and after there were many questions. I told the audience I would stay till all their questions were answered. After a while they moved us to another room, and I was there over 12 hours, and it was a totally amazing experience. Each question is worth taking seriously as sometimes you answer a question or send a patient to a good clinician and that few minutes changes their or their children’s lives forever. Each year at the annual conference people come up to me and report how well they are doing. Life is short; if I can make such a difference it makes what I do totally worthwhile. This is such rewarding work.

Through my advocacy work I’ve met lots of other people with OCD, and so many of them either refuse to take medication in the first place or decide to go off it because they see it as a crutch. Say you have a patient you think could benefit from medication, but she is either afraid or thinks taking medication is a sign of weakness. What would you tell her?

This is always a hard problem. Sometimes medication helps a lot and people decide to stop it even though they are not having much in terms of side effects. If people get well after long periods of illness, there are demands on them. Work. Family. Dating. Et cetera. It is sometimes easier just to go back to the old and “comfortable” illness. Some people almost see OCD as an old friend. I explain that using meds for OCD is really no different from a diabetic using pills or insulin to control their sugar. The person has an illness and the medication can help them lead a more normal life.

Who can benefit from a residential program like OCDI? Would an individual with OCD enroll only after exhausting medication and outpatient ERP?

Usually outpatient treatment like behavior therapy and medications are tried before the OCDI. Most patients at the OCDI have not done well with these treatments.

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I have what some people call pure O; I mostly struggle with obsessions and don’t perform physical compulsions such as hand-washing. How would my OCD be treated at OCDI? 

Patients with so-called pure O all have compulsions but the compulsions are mental. If you look at it like that, the treatments are similar. They can read Lee Baer’s book The Imp of the Mind for detailed instructions on how to manage the thoughts. Everyone has intrusive thoughts but they pass through the brain quickly if you don’t have OCD. If you have OCD, the thoughts can get stuck and a person will ruminate about the thought; what it means, are they a bad person, et cetera. The pure O patient has to learn to just let the thoughts be there and not analyze or ritualize about the thought. Similar to a person who washes away contaminants; they just contaminate themselves and then not wash.

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

Don’t let your OCD go untreated. Thousands of people just accept OCD and don’t take advantage of treatments that may do a world of good. OCD sucks the enjoyment out of life and life is meant to be enjoyed. It is short (I realize this more now that I am older) and there is no cosmic requirement for lifelong suffering.

Tuesday Q&A: Kevin Putman

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KevinandWife

Kevin and his wife, Tana

Tuesday, Tuesday, Tuesday! Welcome Kevin Putman, one of last year’s recipients of the IOCDF Hero Award—and with good reason. He’s done a tremendous amount of awareness building in his small community in Michigan and has shared his unique idea for OCD advocacy with the larger community as well: Ping Pong 4 OCD. Maybe you’ve played ping pong at one of the OCD Conferences and met Kevin yourself. He’s funny, approachable, and tireless in his efforts to get people to the right treatment sooner.

Last summer at the International OCD Conference you were presented with the IOCDF Hero Award—and you were very deserving! Tell us what you’d been doing in advocacy to get you on the hero radar.

It was unexpected. I see so many people doing so many big things and I always feel like I’m not big time, or doing big things. It just doesn’t seem like it to me, but I guess it seems like it to someone. There are three main things that I do. One is an OCD support group here in Petoskey, Michigan, where I live, and that’s top on the list for sure. That’s really giving back and helping out. We do that once a month. I really enjoy doing that. The other thing that I have going on — I like to say “we” because it’s the community here — is RUN OCD, which is the nonprofit organization, and the big event is Ping Pong 4 OCD. We do those events here in Michigan and we do them in conjunction with the International OCD Foundation. We’ve kind of branched out and some other people have taken that torch and run with it in their community. I also work with Christian Benway. He’s brought in the disc golf for OCD side of RUN OCD.

You have OCD yourself. Can you share some of your OCD story with us? When were you diagnosed, and how did you realize something was wrong—and that it could be OCD?

My formal diagnosis didn’t come until I was married with kids. Actually, my wife was the one who diagnosed me. I self-diagnosed, but I probably didn’t get an official diagnosis until I was almost 30. Looking back on it, I know that I have had OCD since forever. I can’t think of a time that I didn’t. But in college I was taking a psychology class, Psych 101. We were talking about anxiety disorders, and one day the topic happened to be OCD. I’m just some college kid taking notes, but some things my professor was saying were relating so much to me it was crazy. It was like someone was punching me in the stomach every time he said, “Someone with OCD does this, and they do this.” It was real stuff. At that point I still wasn’t convinced; I thought, “Oh, this is just a coincidence.” But from there I started to pay attention more, and once I got married and started living with my wife she started noticing a lot of stuff—the checking, the rechecking, and a lot of other things I was doing that revolved around OCD.

Once you knew it was OCD how did you go about treating it?

Well, at first, I went to a counselor locally. I went to a handful of counselors here in this town, and the unfortunate part was that there wasn’t really anyone who knew what to do, so I wasn’t treated how I needed to be treated for a long time. I had a handful of counselors where I would go in and they would just accommodate me and reassure me— it was almost like my weekly reassurance session. I’d save up all this stuff I was anxious about and I would say, “Here’s what’s going on” and we’d talk about how things are going to be all right, it’s gonna be okay, the total opposite of what we needed to be doing, which was to build that anxiety up. So it wasn’t really until I got into the Houston OCD program that I started hitting hard and started working on ERP. My wife is a counselor, and she had read Loving Someone With OCD, and that book talks a lot about the family accommodation piece. She had already started doing that before I went to Houston; she was not accommodating at all at home because she’d read that for her to be checking locks and checking the stove for me was not the right thing to do. That was a huge, huge benefit to have her. To have your wife be a counselor is a lucky thing.

So do you live in a relatively small town? Is that why there weren’t that many people who knew about it?

Right, exactly. I live in Petoskey, Michigan, which is a super small resort community, and anyone who really specializes in OCD would be in the Detroit or Lansing area, which is like three hours away from here. Our counselors up here have to be so broad; they can’t just focus on OCD because they wouldn’t have enough clientele. They have to do the full gamut, and that means they may or may not be up on what the correct practices are. Now that I have gone to the conferences and gone to the Houston OCD program and I’m running this OCD support group I’ve made myself available in the community as an OCD resource. So whenever I talk to anybody, whenever anyone calls me, and they tell me that they’re in counseling, I always ask, “Have you ever heard of ERP?” I would say 99.99 percent of the time they say no, and they’ve been treated by a counselor for a while. It’s a little bit scary to me, still, but not everybody knows it. I’ve been trying to bring that in, too, when I talk to people. I just met with someone the other day, and they were sharing with me, and they had never heard of ERP. They’re a big research type of person, so I said, “Google it, and if you’re not doing that with your counselor, you need to find someone else.”

How did you go from that to the Houston program? Did you find out about it on your own, like doing Internet research?

My wife found it. I have “just right” OCD; my OCD revolves around checking, and I do a lot of symmetry and over-responsibility. All of my symptoms crashed down on me all at once. I didn’t want to move one way because it didn’t feel right, or I’d have to move back the other way. I didn’t want to turn anything on because I’d have to turn it off. I was sinking into this deep, deep depression, and I was suicidal. I was not functioning. I was on the couch, burying myself underneath a sleeping bag, and I was making a plan to kill myself. My wife was like, “Okay, we’ve got to do something.” She called Community Mental Health here in town and they said, “O-C-what?” It was like, “Are you kidding me?” At first I was going to go out to McLean in Boston. That was the original plan, but they were full and couldn’t take me. This was on a Thursday or Friday, and my wife said, “No, he’s got to get in now.” She called the Houston program and they said, “All right, we’ll see you Monday morning,” and we went.

Did you have kids at this point?

I did. My kids at the time were three and six.

You started a nonprofit called RUN OCD. First of all, explain the name for some of my younger readers. 

[Laughs.] Isn’t that funny? We were looking for a cool T-shirt to make, so it wasn’t supposed to be what it happened to be. I’m a big hip-hop guy from back in the day, so we looked at the logo for RUN DMC, the rap group from the 1980s, early ’90s. Their logo looks exactly the same except it says RUN DMC and ours is RUN OCD. So at first it was just a play on words and a T-shirt, and then when Ping Pong for OCD started happening and Christian and I were both speaking and we were doing support groups and events, we realized maybe this is bigger than we thought it was going to be. People will always ask, “What does it mean?” I wish there was a straight answer but there’s not. It’s kind of what you want it to be. A lot of the time we say it’s to run your own OCD or to take charge, don’t let OCD run you, run your own OCD. It’s neat to see who gets the RUN DMC reference and who doesn’t. I like that it’s ambiguous because it makes people ask questions. You walk down the street with a RUN OCD T-shirt on and someone’s like, “What do you got going on there?” And it opens the door for conversation and for sharing. It’s inevitable—if you talk with someone they’ll be like, “Oh my gosh, my cousin, my brother, myself” has OCD, and it opens that door. I have met so many people and built so many relationships just because I was walking down the street wearing the shirt or the hat. I’ve considered changing the name, I’ve considered adding a tag line, I’ve considered all these things, but I really like that people have to ask because then the conversation can start.KevinPingPong

Let’s talk about ping pong. I love it, but what I like most about it is seeing how many times my partner and I can go back and forth, so I wouldn’t win any tournaments. What gave you the idea to introduce ping pong to the OCD conference? 

We’d done a couple of ping pong for OCD events in Michigan, and they were fun. And I’d been going to the conferences and it seemed like you’d get into the evenings of the conferences and there was not a ton to do. They had some evening activities, but a lot of times the conferences are in these gigantic towns and you don’t necessarily want to venture out into San Diego or Chicago—of course there’s cool stuff to do, but you’re meeting people and you just end up staying right in the conference hotel and want to spend time with these folks. So I thought, “Man, we have all these big conference rooms that we use during the day but we don’t use in the evenings, so wouldn’t it be neat to just clear them out and put in some ping pong tables?” Then people can come in and they can hang out and it’s a nice networking time, a nice ice-breaking time. The kids really like it too because the conference has a bunch of kids and they can’t go out to the bars or the restaurants, really, and they’re looking for something to do in the evening. It’s something that people of all ages and all skill levels can participate in. We tried it once and people liked it and we kept doing it.

I think most of us with OCD have pet peeves about how misunderstood the disorder is and how the misconceptions are perpetuated. How do you feel about things like someone saying, “I’m so OCD about how I organize my clothes”? 

Some people get all fired up about that kind of stuff. I know there’s a huge side of the OCD community who thinks that’s blasphemy and thinks it’s disrespectful. That bothers me none. What bothers me is people in the OCD community who are bothered by it because I think it’s silly. I think there’s so many more places that we can put time and energy into than chasing down someone who says, “Oh, I’m so OCD about organizing my groceries.” I just think it’s a null point and I don’t care one bit. I really don’t.

What would you say is your biggest OCD awareness accomplishment?

The first ever Ping Pong 4 OCD tournament we did in my hometown in 2011. It just came out of nowhere. The response from the community was super cool. Every person I talked to said yes, everywhere I went somebody donated something, gave me something. It was just really cool and the neat part about it was that the whole idea behind Ping Pong 4 OCD stemmed from starting a support group. When I was in the Houston OCD program I had found huge value in the Houston-area OCD support groups, which weren’t affiliated with the program. It was people coming from the community and all walks of life, different shapes and colors and sizes, and I thought that was so cool. My therapist talked to me at discharge about how I needed to find an OCD support group when I went home, and I said, “We don’t have one.” She said, “Well, you’re going to have to start one.” I was trying to figure out how you start an OCD support group. What, you put a sign in the door and say, “All right, OCD support group tomorrow night!” You’d be sitting in a room all by yourself. We needed an event or a gimmick, basically, to get people together to get this support group started, so we organized a ping pong tournament. We just had this small little table in the corner that had some books and some pamphlets about OCD awareness and a sign-up sheet that said, “I’m interested in attending an OCD support group.” We never announced that we were doing that; it was just ping pong all day long, but the people who needed to find that table, and the people who needed to put their names on that list, did. From that list we got the OCD support group started and we’re still doing it five years later.

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

Laugh. Because it’s really funny when you think about it, the things we do. It’s just funny. And if you can use humor as your friend I think that’s a huge piece of recovery.

Tuesday Q&A: Jeff Szymanski

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JeffIsSittingI know what you’re thinking: How do you pronounce that name? As far as I can tell, it’s something like Shhhhhmanski. But here’s the thing: You can probably* just call him Jeff! He certainly deserves the respect and honor of being called Dr. Szymanski, but he’s friendly and open enough that you’ll find yourself on a first-name basis.

*For the record, he hasn’t authorized me to say you can call him Jeff.

Jeff Szymanski has undertaken the incredible responsibility of leading the International OCD Foundation. It’s a job he seemed born to do. He doesn’t have to have OCD himself to go to bat for us — he seems as genuinely frustrated as we do when he hears “I’m soooo OCD” or that OCD is all about a germ phobia. He’s working hard to overcome stigma and spread the awareness OCD — and its sufferers — so desperately need.

Tell us how you came to be the executive director of IOCDF.

In 2001 I was hired as a staff psychologist at the McLean OCD Institute in Belmont, Massachusetts, a suburb of Boston. In 2008, as the Director of Psychological Services there, I became aware of the transition at the Foundation. Namely, that the organization was moving from New Haven, Connecticut, up to Boston. During my tenure at the Institute, while I was able to help many people with OCD and related disorders, what I was continually frustrated by was the lack of access many individuals with OCD had to effective care. I worked with many people, who, if they had gotten the right treatment years before, would not have had to suffer unnecessarily for so many years. When I was offered the position at the Foundation, I realized it would give me the opportunity to work on a much larger scale to help those affected by OCD and related disorders in a more macro way.

During the 2015 conference wrap-up podcast, you mentioned that your motivation to become a psychologist wasn’t primarily about helping people. However, that’s exactly what you’ve been doing. Did you make a conscious decision to make that shift, or did it happen naturally?

When you apply to graduate school you are asked to write a “personal statement.” That is, “Why do you want to be a psychologist?” When I look back at what I wrote then, it was true. I wanted to understand why people did what they did. Why they made the choices they made. This is still the primary driving force in my career. At the Foundation, the question changed to “Why, as a society, can’t people who need access to help get access to that help? How do we, as a group, make decisions in which people who could get better aren’t given that opportunity?” At my core I am a problem solver. I am curious. I like solutions.

I don’t see my role as helping people. I see my role as empowering people, giving people access to resources and tools to help themselves. Maybe it’s semantics, but it is how I think about things.

What do you see as the biggest misconception about OCD?

I wrote a blog a few years back entitled “The ‘D’ in OCD.” I think this captures my thinking about this to this day. If you confuse being “obsessive” or “compulsive” with OCD, then it is easy to dismiss or minimize the experience of actually having OCD. The other common misconception concering any disorder, is that our mental health is 100% determined by our willpower. Our brains, our physiology, the power of habit and a lifetime of habits (that may or may not have ever been “chosen”) are incredibly powerful. When we say to someone, “Don’t be so anxious,” or “You don’t need to worry so much,” we are enacting the fallacy that we can “control” our anxiety or worry.

What advice do you have for someone who may not have ready access to the proper care, whether because they live in a rural area in America or in another country?

The Internet is the great connector! There are amazing online support groups and a “virtual” community that is willing to be there for people all across the globe. I believe accessing a community can be incredibly healing. There are also more and more internet-based services for people who need more structured support: some therapists treat clients via skype, and there are now numerous smartphone apps to help with self-directed ERP. Here are some of those resources.

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Every once in a while someone will email me from another country and say they can’t tell their family or friends about their OCD because their culture doesn’t accept mental illness or has strong stigmas against it. How can someone in that situation get support? And how can we help spread awareness in such countries? 

As noted in my answer above I think that people can connect via the Internet if they have access. This issue is also the main motivation in changing our name to the International OCD Foundation. To widen our focus to those all around the world affected by OCD and related disorders. And to bring together those willing to help. It has been an incredibly rewarding experience to build our Global Partnership program. So much more room for growth there, however. In 2015 we appointed our first international spokesperson, Ro Vitale, specifically to help increase awareness and combat stigma in Latin America. We look forward to continuing to expand Ro’s role in that regard, and continuing to partner with other organizations with similar missions around the globe. With more awareness there will be more acceptance.

The IOCDF recently launched a new initiative, asking people to become OCDvocates. Tell us more about that.

When I took over the Foundation in 2008 there was so much infrastructure and programming we were focused on building. During those first few years we received an increasing number of people saying they wanted to be part of the mission. But, we didn’t have a place to “plug them in.” Last year, our Director of Marketing and Communications, Carly Bourne, along with our amazing Spokespeople, Jeff Bell, Elizabeth McIngvale, Romina Vitale and Ethan Smith all collaborated to come up with the OCDvocate program. The idea is to have grassroots-based activities and “calls to action” that anyone who would like to participate in can join. An example of this is the holiday card initiative this past year. We asked our OCDvocates to write a personal note in a holiday card so that we could mail them out to patients currently receiving treatment at residential and intensive outpatient treatment programs around the country. Patients were able to receive words of encouragement from those who knew what it was like to be where they were at in that moment and to continue to fight to get their lives back. Anyone can become an OCDvocate by filling out the pledge.

What would you tell someone who feels hopeless, who thinks his or her OCD will never get better?

I borrow this from the acceptance and commitment therapy (ACT) community: With or without OCD symptoms, what really matters to you in your life? At the end of it all, what do you want your life to stand for? And OCD symptoms or not, how can you commit to making those values a reality?

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Let’s say I’ve never been to the IOCDF’s Annual OCD Conference before. Why should I go?

This one is your hardest question! This is like learning to play tennis by reading a book about how to play tennis. The sense of generosity and community at the Annual OCD Conference is powerful and you can only truly understand it if you have attended one. I believe one of the most valuable experiences for those affected by OCD and related disorders is to find a community like this, and the Annual OCD Conference exemplifies that in spades!

One of the most common stories I hear from others with OCD is “It took me umpteen years to be diagnosed because I thought people with OCD just wash their hands a lot.” Another is “I did talk therapy at first and that made my OCD worse.” What can we do as a community to dispel myths about OCD and make sure therapists know how to properly treat OCD?

This is a core issue that we focus on every day at the Foundation. Raising awareness about what OCD is and what effective treatment looks like. This is the driving force behind all of our initiatives from the Conference to the Walk to OCD Awareness Week to the OCDvocate program. It is all with the intention of making sure that if you are affected by OCD or a related disorder that you have access to the help you need.

One thing that helps tremendously with this, is people like you being willing to share their stories publicly. Whether through a blog, or book, or simply by talking with family and friends. The more representations we have of what OCD actually looks and feels like, the more people will be able to identify their symptoms and find the right help. Sharing stories also helps to dispel myths and combats stigma by putting a (familiar) face to the disorder. Stigma is so often based out of fear and a lack of understanding. By sharing your story, you are actively helping to eliminate that fear.

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

Get connected. Get involved. On any level.

Tuesday Q&A: Wendy Mueller

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Wendy January 2014I don’t know what’s harder to believe, that it’s Tuesday already or that it’s December already. Here in Minnesota we’re finally getting our first inches of snow. Today’s guest, Wendy Mueller, is always eager to remind me that where she lives — Southern California — she never has to deal with snow or cold temperatures.

But Wendy’s full of useful information, too, and isn’t just adept at stating the obvious (just kidding, Wendy!). After recovering from OCD over 20 years ago, Wendy has dedicated much of her time and energy to helping others with OCD; she runs a large online support group and knows what others need to hear in order to face OCD head-on. I really have to give her credit, too — not to date Wendy, but this was before the Internet was always accessible, before you could take a photo on the bus and upload it for all of your friends to see a second later. She sought out support and stuck with it, eventually giving back to the same community that helped her so much. (But seriously, what is Prodigy?)

Let’s get Wendy’s take on it all.

You run a huge online support group called the OCD-Support List. How did you become involved with this great resource?

Twenty-eight years ago, I developed severe OCD upon the birth of my first child. For the first year and a half, I didn’t even know what was wrong with me. I hid my OCD symptoms from everyone around me, because I thought I was going crazy and I didn’t want to be put in a psychiatric hospital. Once I found out that I had OCD (after reading an article about OCD in Newsweek magazine in early 1989), I immediately started to seek out some sort of support system so that I could talk to other people who had OCD.

When I got my first computer in 1990, I started looking around the various health “bulletin boards” on the Prodigy computer network, but I was unable to find any support groups related to OCD. So I decided to start one on my own. I created a new topic for OCD and posted a message asking if there were other people suffering from OCD, and — little by little — my small online OCD group began to grow. I moderated that Prodigy group for about seven years (we eventually had about 60 members of the group), but I also joined another larger online OCD support group that was being moderated by Chris Vertullo, an OCD advocate. Her group had hundreds of members, and it was a very active support group that also included regular contributions from several OCD experts, including Dr. James Claiborn and Dr. Michael Jenike.

When Chris decided to “retire” from leading the group in 2001, I took over leadership of the group with a few hundred members. Over the years, the group has snowballed into a huge group that now has more than 5,200 members from all over the world. Dr. Claiborn still contributes daily to the group, and I keep a close eye on the messages being posted so that we always stick to the topic of OCD.

So, the shorter answer to your question is: I started up an online support group back in 1991 because I personally wanted to communicate with other people with OCD. For four years, I was part of the online group as a sufferer. However, I recovered almost completely in 1995 (thanks to taking medication and learning exposure and response prevention [ERP]), and ever since then, I have been able to encourage and give hope to others who are still struggling by telling people my own story of recovery from severe OCD and depression.

Obviously you find value in online support groups. What advantages are there to meeting online vs. meeting in person?

There are some great advantages to meeting in an online group, as opposed to an in-person group, but the first thing you need to do is make sure that you find an online group that is well-moderated by someone who regularly reviews the posted messages and makes sure that people stick to the topic of OCD. It’s also important to have a closely moderated group so that the moderator can correct any misinformation that is posted and also so that the moderator can intervene in the case of any angry or hurtful comments that might be posted. It’s important to have the group moderated by someone who is there regularly, keeping an eye on things on a daily basis. It’s also good to find a group that has contributions from OCD expert doctors/therapists, so that members are getting the best information and guidance possible regarding the proper treatment for OCD.

An online group is a terrific choice for people who have no local access to OCD treatment in their area or who cannot afford OCD treatment. Also, many people with OCD find it extremely hard to talk about their OCD with others — even with a therapist — but one can remain completely anonymous in an online group so that no one ever knows your true identity. You can even join an online group just to read the messages posted by other members; you can remain quiet and just “lurk,” without ever having to say a word. It can be extremely helpful to read the discussions going on between other members of the online group as well as the contributions from the OCD expert therapists in the group.

With an online group, there are no restrictions to the time of day that you can seek support. There are people posting and answering messages at all hours of the day — even in the wee hours of the night — so you can almost always get an understanding and helpful response from someone, no matter what time of day you post a message to the group.

You developed postpartum OCD after your first daughter was born, and like so many other mothers you were afraid to tell anyone what you were going through — you didn’t want your child taken away, or to be involuntarily committed to a psychiatric ward. Of course, those fears were unfounded, but you didn’t know that at the time. When did you finally realize you had OCD, and how did you make the connection?

I finally realized I had OCD when I came upon an article in Newsweek magazine in which Patricia Perkins (one of the original founders of the International OCD Foundation) was interviewed about her OCD and about the work of IOCDF. As soon as I started reading that article, I knew — without a doubt — that’s what I had been struggling with for the last 18 months since my daughter was born. The article described exactly the type of “crazy” things I had been doing all that time — checking door locks and stove knobs, compulsively lining things up neatly and symmetrically, counting to a “magic” number in my head whenever I did things, compulsively repeating actions over and over until it “felt right,” and worrying excessively about almost everything I did all day long. As soon as I read that article, I told my psychiatrist (who was treating me for depression) that I knew I had OCD, and that was the beginning of my road to recovery. The first thing I did was join IOCDF so that I could receive their regular newsletters, and I started attending their annual conferences, starting with the very first one in October 1993 in Minneapolis.

Once you knew you had OCD, how did you go about treating it?

At the time I finally realized that I had OCD, I was severely depressed and extremely disabled by severe OCD, depression, and anxiety. I never slept well, and I cried throughout the days, feeling hopeless and helpless about my life. At that time (1989), I believe that Prozac was the only medication that had come onto the market that was being prescribed for OCD, so I was very willing to give it a try (which I did, but was unsuccessful due to side effects I couldn’t tolerate). I also started reading any books about OCD I could get my hands on, like The Boy Who Couldn’t Stop Washing by Judith Rapoport, Getting Control: Overcoming Your Obsessions and Compulsions by Lee Baer, Stop Obsessing! by Edna Foa and Reid Wilson, and When Once Is Not Enough by Gail Steketee and Kerrin White. The more I read about OCD, the more hopeful I became that I would eventually get better.

Unfortunately, I had a difficult time finding a medication for OCD that didn’t cause initial side effects that I found intolerable. Prozac caused me to be very agitated and anxious, so I had to give up on taking it after a short while. In subsequent years, at different times I tried Anafranil, Zoloft, and Paxil, but those three medications caused me to be very disoriented and confused, so I was forced to give those up also after a short period of time.

Just when I thought I was never going to be able to tolerate any of the OCD medications, a friend with OCD told me to try Prozac in liquid form so that I could start taking it at a very tiny initial dose and very slowly increase the dose over a long period of time, which would enable me to gradually get used to the medication and hopefully avoid any bad side effects. It worked beautifully! It took me about four months to go from 1 mg/day to 60 mg/day Prozac, but once I got up to 60 mg/day and stayed at that dose for about five to six weeks, I really began to notice my OCD fading away. It felt like breaking out of prison! Once I got much better on the medication, I was then able to really dive into learning how to do ERP for my OCD. Prior to taking the Prozac, I had not been successful with ERP, because the OCD was too strong for me to fight through the anxiety. Once the medication successfully kicked in, then I started to make progress with ERP. The combination of medication and learning ERP brought me to almost complete recovery from my six years of severe OCD and depression.

Wendy and Lisa

Both of your daughters have OCD as well. How did your own experience with the disorder help you recognize the symptoms and get them through it? Also, what would you tell someone who already knows they have OCD and worries they’ll pass it along to their children?

A lot of people with OCD worry that they shouldn’t have children, for fear that they will pass their OCD on to their children. This is certainly a possibility. But if you have OCD yourself and know the proper treatments for it, then you are the best possible person to recognize OCD in your child and to guide your child to the correct treatments. Because I knew what it was like to suffer from OCD (and recover from OCD), I knew what my two daughters needed when their OCD started to flare up when they were kids. I was able to recognize their OCD symptoms when they first appeared and promptly seek out the proper therapy and medication for them. They are now both in their 20s and are doing well.

You’re doing well now. How do you keep on top of your symptoms? How long has it been since you really struggled with OCD?

I was very fortunate that both medication (Prozac) and ERP worked so well for me. Because Prozac made such a huge difference in my recovery, I have continued to take the 60 mg/day Prozac for more than 20 years now. I feel like the medication saved my life. I’m still so thankful for my recovery that I have never considered stopping the Prozac in all those years. (I’m fortunate that I don’t have any adverse side effects to the medication.) Because the Prozac continues to help and because I know how to use ERP whenever I get an OCD “urge,” I really have not struggled with OCD for about 20 years.

Once you learn how to use ERP correctly and effectively, you have the tools necessary to fight any OCD issues that come your way. Even if your OCD appears in a form that it has never taken before, once you know how ERP works and how to apply it, you can conquer any type of OCD that comes your way. Learning how to use ERP is hard work, but once you get the hang of it, it really works. I absolutely know that I’m much stronger than my OCD now, so I no longer have a fear of it tormenting me like it did in years past.

How can someone with OCD join your support group?

Anyone can join my online “OCD-Support” group by sending a blank email to OCD-support-subscribe@yahoogroups.com. My group is not only for individuals with OCD but also any family members and friends of people with OCD, as well as treating professionals.

In addition to my large general OCD support group, there are many other well-moderated groups on YahooGroups for more specific OCD issues or groups of people, such as groups for Teens with OCD, Parents of Kids with OCD, Pure-Obsessional OCD, Scrupulosity, Compulsive Skinpicking, Parents of Teens and Young Adults with OCD, and many more.

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

Never lose hope that you can conquer your OCD. The evidence-based treatments (CBT/ERP and the OCD medications) really do work. Believe in them. Work hard at learning how to do ERP. Your persistence and hard work will pay off in the end. But never, ever lose hope. You really can get control of your OCD and return to living your life the way you want to live it.