Category Archives: OCD Conference

Tuesday Q&A: Clint Malarchuk

Standard

ClintCoachingWelcome to Tuesday Q&A! This week we’re hearing from Clint Malarchuk, a man who is supposed to be tough, who isn’t supposed to admit to feeling weak — but he’s shattered misconceptions and is speaking out, particularly about his struggle with OCD, to help others.

Clint is tough, by the way. And he’s really, really nice. Really. I introduced myself to him and his wife, Joanie — who’s also incredibly nice — at the OCD Conference in Boston. They were the keynote speakers, so I recognized them from their photo in the conference program — and then everything started to come together and I realized I’d heard of him before.

Maybe you have, too. Clint was an NHL goalie who made headlines and shocked TV viewers in 1989 when his carotid artery was slashed by St. Louis Blues player Steve Tuttle’s blade during an attempt at a goal. (I’ll spare you the link to the video–finding it is up to you.)

Clint is lucky to be alive, and he’s not likely to be forgotten anytime soon. But his legacy will last far beyond this one bizarre, life-threatening incident: He’s become an advocate for mental health awareness. He’s a voice for other men who aren’t comfortable talking about mental illness, and his story of survival — off the ice — serves as an inspiration for us all. He shares it all in his new book, A Matter of Inches: How I Survived in the Crease and Beyond

You’re a well-known guy, and as you mentioned in your keynote, it’s largely because you had a horrific accident on live TV. One cause of OCD is a traumatic event. Do you think this accident contributed to the onset of your OCD symptoms? What effect did it have on your day-to-day life?

Yes, the trauma really set my OCD off. I certainly already had OCD, though. As a kid I struggled a lot with germs and worrisome thoughts, usually about my mother’s health and safety. I went through different phases of OCD, and even some times where my OCD wasn’t seemingly there. After the accident, my OCD became so magnified: Intrusive thoughts, checking, worrying, along with severe depression. It was difficult to leave the house. This all seemed to worsen within months after the accident.

I was born and raised in Minnesota, and I often say I grew up at the hockey rink. I’ve always thought goalie would be the most stressful position on the team, with the pressure of guarding the net against that tiny puck, hearing the crowd gasp and then groan in unison if it gets through — not to mention the fear of it flying at you with sometimes incredible speed. Did having anxiety affect your performance as a goalie? Did being a goalie cause anxiety?

Being a goalie in the NHL is said to be the most stressful positions in sports. All factors considered, I’d have to agree. With stress comes anxiety. Leading up to games my anxiety would increase immensely. As a result, so would my OCD symptoms. After games I would have a small window of reprieve. Looking back, how I managed to play at the highest level is beyond me. OCD did help me with game preparation. The anxiety was at times unbearable before games. Thank God, once the game started, I was able to perform and the anxiety would leave.

ClintNetAlthough you were diagnosed with OCD fairly early on you managed to slip through the cracks of the treatment system a bit, getting refills on medication for 12 years without ever seeing a psychiatrist. Knowing what you know now, what would you have done differently following your diagnosis?

Not having to really check in with the team doctor was a big downfall for me. I thought as long as I took my medication I would be fine. I could just tell the doctor I need a prescription refill and that was it. Over the years my body got immune to the meds and I definitely got worse. I think it was so gradual that I didn’t realize how bad I was getting. Knowing what I know now, I would have educated myself better and seen a psychiatrist regularly.

You reached a point when you attempted to self-medicate with alcohol, which led to an addiction. Here you were dealing with OCD, PTSD, depression, and addiction. Life had become so unbearable you attempted suicide in 2008. We all have our own ideas of what rock bottom means, but that must have been yours. How did you move on from that moment?

Looking back on my life, I would say I hit more than one rock bottom. At certain times my OCD was so unbearable that I just wanted to die. In 2008, my attempted suicide was a result of one of those states of mind. The only difference is that this time I acted on it, and I am very lucky I didn’t die. I ended up getting the real professional help I desperately needed, but I hope others get help before reaching this sort of rock bottom. Acceptance is a huge word here! I had to accept how sick I was. I had to accept things and go forward and get well. I also had to believe that I could get well, and be happy. I had to accept that it would take accountability on my part. I had to do the work that was required on my side.

You weren’t exactly thrilled about checking into treatment, but your wife, Joanie, gave you no choice. What can you tell my readers who may be hesitant about getting the help they need, even if it means residential treatment?

Checking into a treatment center was where all this began. I was so scared, the fear was paralyzing. I did not want to be admitted into a facility. I was forced into it. My wife and the NHL team I was coaching for insisted on it. Well, thank God they did — it changed me. I got on the right medication, I got educated, I learned tools, and I got healthy. I was so extreme that I don’t know that outpatient therapy would have done the trick. It was life saving and life changing.

ClintandJoanieIt goes without saying that having OCD is hard for us. But it can also take a toll on our loved ones. Joanie stood by you through some of the darkest moments of your life, and it couldn’t have been easy for her. Do you have any advice for my readers whose family members have OCD?

OCD is torturous for us sufferers, but it really hits the whole family as well. When I went into treatment, it was a dual diagnosis facility. Meaning I had to work on my OCD and my self-medicating with alcohol. My wife, Joanie, went to a five-day family program. This was a big turning point for her and us as a couple. Our marriage was in shambles. It was there where she learned about me and my disorder. She was educated and advised. The other families shared their experiences dealing with their loved ones. The biggest thing for Joanie was understanding that I was sick, that the OCD was not who I am, but what I had. There was hope and support for her. Education for family members is crucial, as is counseling.

You’ve noted that men often feel uncomfortable discussing mental illness, that they think they need to be indestructible. As an athlete in one of the rougher sports you especially felt the pressure to remain stoic, but you’ve since written a book and have given several candid interviews. What was the turning point that convinced you to start talking about your struggles with mental illness? 

I think being open in my interviews and getting feedback from fellow sufferers really helped me realize that I was not alone in my struggles. My candidness helped other people, and men started reaching out to me as well. Surviving a suicide attempt, waking up out of a coma with a bullet in my head, really made me reflect: Why was I spared?Why was I successful in that I played in the NHL? Why did I have all these demons through my life? Well, I put it all together and figured the success gives me a platform to speak publicly. Conquering my demons gives me something to speak about, and help those still in the dark places, still struggling. The book was the hardest thing I’ve ever done, but it’s been the most gratifying as well. The emails and conversations from people who read it makes it all worthwhile. Playing goalie in the NHL, you have to be tough, both mentally and physically. Men see that and know I did it while struggling with OCD and other problems. I guess I’ve made it easier for them to admit they’re struggling too.TheCrazyGame

You’re doing well now. How do you stay on top of your symptoms and prevent relapse?

Today, I have to be accountable and do my part to stay healthy. I stay on top of my medication and doctor visits. I try to work out regularly. I meditate to keep balanced. I go to meetings. I support others and be of service to others. I’m grateful every day. I try not to take anything for granted. My wife and family mean everything to me, so I have to be healthy for them. They’ve seen me at my worst and I want to be there for them in every way I can.

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

You don’t have to suffer. It was a long, hard road for me getting well — today there is a lot more help for us. Get help. I know I couldn’t have gotten better by myself. The OCD Conference in Boston really encouraged me. We’ve come a long way in research, medication, therapy, and support. Never feel shame in being ill with something that’s not your fault. Have hope…because it’s real.

Advertisements

Tuesday Q&A: Lee Baer

Standard

IMG_3972 top pickIf you follow my blog or know anything about me at all — at least as far as my OCD story goes — you know how much I respect and admire Dr. Lee Baer, author of The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad ThoughtsWhen I finally made an appointment with an OCD specialist and croaked out a few words like “bad thoughts” and “no one will love me if they know,” the psychiatrist recommended The Imp of the Mind. “It could fit in my front pocket,” he said, patting his shirtfront, “but it’s packed with good information.” (By the way, that’s only true if you have unusually large pockets, because the book isn’t that small.)

That “little” book saved me. After having silently suffered with taboo obsessions for years and years, I learned that I wasn’t actually alone — I wasn’t the only person who’d had thoughts like I’d had, and they were nice, relatively normal people, too.

Nine years later, Lee and I are collaborating on a peer-to-peer support program (stay tuned!), and we presented together at the OCD Conference in Boston in August. What a rush! As I tearfully told everyone in the audience, I was up there with my hero.

Now you have the benefit of hearing directly from him — sorry, these are all my questions, but I tried to ask what you’d want to yourself if you had the chance. Thanks, Lee!

When I was struggling the most with my taboo obsessions I was actually worried that getting better would be a negative thing. I thought, “What kind of person would I be if these terrible thoughts didn’t bother me?” and I thought the distress is what kept me from acting on them. What would you tell someone with similar fears?

This is very common: OCD is very tricky so it puts sufferers of taboo thoughts in a “damned if you do, damned if you don’t” dilemma. It is very important to recognize that the OCD is trying to make you think like this and not be fooled. CBT and/or medications will not make you any less empathetic to terrible things that happen in the real world–instead, they will keep you from over-reacting to “what-if” scenarios that OCD conjures up in your mind.

What made you decide to treat OCD?

I have specialized in treating patients with OCD and related problems since about 1985, when Drs. Jenike, Minichiello, and I established one of the first OCD treatment and research programs in the country at Massachusetts General Hospital, because we were fascinated by this disorder, in which otherwise highly intelligent people experienced thoughts and rituals that they were unable to control. Also, at that time, OCD was considered to be resistant to existing treatments so we saw solving this problem as both a challenge and an opportunity to make a real difference in people’s lives.

ImpoftheMind

I recommend The Imp of the Mind all the time. As you know, it was one of the first things my psychiatrist prescribed the day he diagnosed me with OCD, and just knowing I wasn’t the only person with taboo obsessions like mine helped tremendously. Why did you focus on this type of OCD?

The idea for this book developed soon after we founded the OCD Institute residential treatment program at McLean Hospital in 1997. In the course of running several groups in this program, I noticed that patients with taboo obsessions felt ashamed to discuss their problems in group settings with other OCD sufferers with problems like excessive hand-washing or checking doors or electric plugs. When I asked why, these sufferers of taboo obsessions told me they felt that the other patients’ problems–although very troubling–did not have a moral component and did cause one to question if he or she was truly evil. They worried that these other patients — although they also had OCD — would not understand their taboo obsessions and think they, in fact, wanted to do the terrible things they imagined. To address this problem, I began a separate evening group for individuals with taboo obsessions, and found that the participants experienced great relief in being able to share their experiences with others who had similar problems. It was through running this group that I recognized the need for a book on this topic to reach others who were suffering in private. And it was through my experience with these groups over several years that I learned much of what I know about these taboo obsessions.

In The Imp of the Mind you share an example from White Bears and Other Unwanted Thoughts by Dr. Daniel Wegner. The basic idea is that if you tell someone they’re forbidden from having a certain thought — in this case, picturing a white bear — they’ll be even more likely to have the thought. In fact, the thought becomes stronger the more they try to rid it from their mind. How can someone with taboo intrusive thoughts overcome the urge to push the obsessions out of their minds as quickly as possible? The thought of murdering a loved one is so painful it’s a natural response to recoil at it.

Dr. Wegner’s book explains one key reason for the “stickiness” of taboo obsessions in a very easy-to-understand way. Dr. Wegner and I often discussed this topic, both before and after he joined the Harvard College faculty, and I was saddened by his untimely passing two years ago. We agreed that the first step for sufferers of taboo obsessions was for them to understand that thoughts passing through our minds are not as important as we often believe them to be. Everyone has thoughts they don’t like having at times, but the very universal nature of these thoughts proves that they are not dangerous — if this were not the case, violent and sexual attacks would be occurring daily in every home and office! Taking this leap of faith is often the first step in successful treatment. Secondly, sufferers have to understand that OCD is “tricky” and it will try to get you to fight the obsessions, giving them strength, through the mechanism of “thought suppression” that Dr. Wegner researched so thoroughly. Truly understanding these two concepts often reduces the OCD sufferers’ suffering instantly.

People with taboo obsessions are terrified they’ll act on their thoughts. They think the thoughts must mean something; otherwise they wouldn’t have them. Without giving in to our compulsion to be reassured, what can you tell us about the likelihood of people with OCD acting on their obsessions?

Although I tell my patients (only once, mind you!) that based on my experience, and the experience of my colleagues who treat OCD, they will not act on their violent or sexual obsessions. However, I also know that this will not really work to reassure them, because OCD preys on doubt and tries to get them to find absolute, 100 percent certainty. Yet there is no absolute certainty about anything in the future — even about the sun rising tomorrow — so the solution is to learn to live with the feelings of uncertainty, even of things that are extremely unlikely.

Why do you recommend ERP to patients with OCD?

I tell my patients that we all have a “rational brain” and an “emotional brain.” Their rational brain can understand that their taboo obsessions are not meaningful, and they need to learn to let these obsessions pass without fighting them, while their emotional mind can continue to react with strong, uncomfortable feelings to these thoughts. The most effective, non-drug treatment we have for reducing or eliminating this reaction of their emotional mind is through exposure and response prevention. I describe this process in detail in my book Getting Control.

getting-control-overcoming-your-obsessions-and-compulsions-lee-baer

Many people with “pure O,” that is, mostly obsessions coupled with mental compulsions, wonder how ERP will work for them. You can’t have advise them to touch a toilet seat and then resist the compulsion to wash their hands, for example. Let’s say someone with pedophilia OCD comes to you. How might you go about exposures?

I’d first help them to identify situations that they are avoiding due to their obsessions. Next I would have them gradually go into these situations while learning to tolerate the discomfort and obsessions that come while doing it. This is called in-vivo, or real-life, exposure and response prevention, and I always try to begin with this if possible. We’d also probably prepare a worst-case scenario of their worst fear coming true for them to record and listen to at home until their discomfort goes down without ritualizing. This is called imaginal exposure and response prevention.

What advice do you have for folks who live in rural areas or far from quality care?

I would definitely suggest they start by joining the International OCD Foundation (IOCDF) and, if there is one, their local chapter. This will provide them a wealth of support and information about support groups and providers in their area, as well as the annual meetings for sufferers and their families to learn about treatment for OCD.

You and I have been working on a peer support program — our goal is to match folks who have taboo obsessions with people who have had similar obsessions and have been some progress toward recovery. What are the benefits of such support?

My experience has always been that it benefits both individuals greatly: I have yet to have a patient get better from their taboo obsessions who is not excited about the idea of having the chance to give back to another sufferer at an earlier stage of dealing with this disorder (probably because they remember how hard it was at the beginning for them). And for my new patients, hearing from someone with similar symptoms who has gotten better gives them hope, and also lets them feel comfortable sharing some of their most private fears, often for the first time.

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

Try and find someone you trust to talk with about your obsessive thoughts. This can be a family member, a doctor, a clergy person, or someone affiliated with the IOCDF. But no one should have to deal with OCD alone.

Tuesday Q&A: Carol Rettner

Standard
JeffCarolDancing

Carol and Jeff on the dance floor

This week I’m hosting Carol Rettner, a kind, hilarious, and brave woman I met at the OCD Conference in L.A. in 2014. When I met Jeff Bell and mentioned I was from Minneapolis, he asked if I’d met Carol — I hadn’t — and later introduced us. He also told me that until recently Carol hadn’t left Minnesota for nearly three decades, but there she was at a conference in California, rooming with a woman she’d met at another conference. And this past summer Carol and I roomed together in Boston, where I learned just how delightful she is.

Carol credits Jeff with helping her recover from OCD and make great strides, and their friendship is a testament to how incredibly important a strong support system is. That said, Carol had to do the hard work herself, and I think you’ll agree that her strength is inspiring. It is possible to get better, even one small step at a time. (But for the record, Jeff is awesome.)

Let’s hear from Carol.

How did you first hear about the conference? Why did you decide to go?

My OCD therapist had mentioned it and then a friend said she was going and asked me to go along. I decided to go to that conference because it was in my home state and if my anxiety got too high I could be home in 20 minutes. It was also less expensive since I was able to volunteer and didn’t have the extra expense of a plane ticket. OCD had taken a toll on my finances.

I had friends who were attending and so with a lot of encouragement and a little bit of pushing from my therapist, I decided to risk it. My OCD was getting progressively worse and soon my contamination fears took over my life. Public transportation became almost impossible and if I did have to use it, the decontamination process I had to go through after could last for days. So I didn’t leave Minnesota for 27 years except for my four-month stay at Rogers when I did their residential OCD program.

Tell us about your first conference. Going must have been hard, but you pushed past your fears and ended up meeting people who understand what you’d been going through. 

My first conference was in Minneapolis and I was miserable. I remember I kept telling myself I should just go home! After all, it would only take me 20 minutes and I could be out of this anxiety-provoking situation. I guess somehow I knew that even though I could feel better in 20 minutes it wouldn’t last! OCD would find me again. I had been running for years and I was so tired. I either had to fight or die. It was in Minneapolis that I met Jeff Bell. He saw me looking miserable and reached out to me. I ran from him, too. I did find him before the conference ended and we talked and I cried and we became dear friends. I kept in contact with him, I kept doing my ERP, and I slowly got stronger.

That hard work — and your friend’s support — paid off, because making your next conference experience a reality required even more gumption. 

It was three years after attending my first conference in Minneapolis and 27 of not leaving Minnesota that I started thinking about going to the conference in Chicago. That would mean an eight-hour ride on the Mega Bus, using a public restroom, a taxi cab ride to the hotel, and being more than 20 minutes away from home. At the time it seemed like a terrible idea for someone with severe contamination fears. I was terrified, but I had to do something to save my life. Even if I had managed to stay alive physically I was not living.

I made it to Chicago and that’s where I finally realized I could feel both anxious and safe. I remember standing on Navy Pier with Jeff Bell and I just started to cry, but for the first time in a very long time they were tears of happiness. I remember telling him that I finally felt alive.

JeffCarol

How long have you had OCD? How did you realize it was OCD — were you diagnosed by a doctor, and if so, did you have any idea you had OCD before you made an appointment? 

I’ve had OCD since about the age of three. At that time no one really knew anything about it, and I remember my parents telling me they thought I was just trying to annoy them. As I got older I started hearing and reading more about it. When I was in college I met a person who had OCD and she confirmed what I already knew. It took her six years to convince me to finally get help. I had already lost several jobs because of my OCD. So I went to my first appointment, sat down, and said, “I have OCD, can I leave now?” He was a nice doctor, but I didn’t get ERP therapy and I didn’t get better. I quit counting my hospitalizations after number 37.

Can you share some of your obsessions and compulsions with us? Was there one you considered the worst or the hardest to overcome?

When I was little everything revolved around keeping people safe. I had to say my prayers in a certain order. I would do these tapping rituals on my closet door at night and if I deviated from the pattern I would have to do the original and all of the deviations. I also had scrupulosity issues when I was fairly young. I remember my dad telling me that scrupulosity was a sin because it meant you didn’t believe in a forgiving God. I spent Saturdays going to confession; I went from church to church re-confessing because I was afraid I had forgotten something. I also had contamination and checking. I think the hardest one was the harming fears. I remember I had wanted to be an elementary school teacher. I started in the program in college but dropped out because of the harming fears. This was definitely the worst one for me because they made me feel like I was some kind of a monster and they kept me from becoming a teacher.

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

I saw many different psychiatrists and therapists, but it wasn’t until I started doing ERP that I began to improve. I kept looking for an easier way out and then realized there wasn’t one.

I sometimes say I had to hit rock bottom before I finally got help. Did you ever hit what you considered rock bottom? Tell us about it.

I feel like I was at rock bottom for a very long time. I would lie in bed at night wondering if I would or could make it through the next day. I was at a point in my life where I completely stopped making plans for a future. I truly believed that this was both  my present and my future. There was nothing else. My nights were consumed with OCD. I would plan the route I would take from my bed to my closet, what I could touch and what I couldn’t, what was a safe number to set my alarm at, the thoughts spinning and spinning until I finally fell asleep. Only to have the same thoughts reappear in my OCD dreams. As I started to do ERP and build a great support system something amazing happened: I started to make plans again. These were not plans of how I would make it through the day, these were plans of how I would live each day!

We roomed together at the conference in Boston this year, so I know you’re doing pretty well. How did you get to this point on your journey with OCD?

I finally had to face the fact that there was no eaJennCarolsy way out. This wasn’t an illness I could take medications for for a few weeks and be cured. ERP was my best option and also the hardest. I constantly have to remind myself that I don’t need to do everything perfectly. Every step I take forward is one step closer to the life I want for myself. This has always been an issue when I attend the OCD Conference because I still sleep on an air mattress because of contamination fears. In a perfect world I would jump in a hotel bed and deal with it, but the world isn’t perfect and neither am I. I just need to do my best and I will get there.

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

Don’t base the decisions you make in your life on what your OCD wants. It is your life; base your decisions on what you want.

OCD Conference in Boston

Standard

I blogged for the International OCD Foundation again this year, recapping the conference events from my own perspective.

Enjoy! Although there is so much more to the conference than I wrote about, I hope you see how wonderful the experience can be and make plans to go to Chicago next summer.

OCD Conference: Boston Edition

OCD Conference: Saturday, Saturday, Saturday!

OCD Conference: Going Home

OCD Conference!

Standard

The 22nd annual OCD Conference is just around the corner! I’m looking forward to four days with hundreds and hundreds of people who either have OCD, treat OCD, or want to learn more about OCD for any number of reasons.

It’s in Boston this year, so I’m especially excited because I’ve never been there. I won’t have much time to experience the “real” Boston, though, because my schedule is filling up by the minute: Cocktail hour, pub trivia, a meetup with a Facebook support group, an affiliate meeting, my presentation with Lee Baer–not to mention all of the sessions. I noticed that the psychiatrist who diagnosed me with OCD will be presenting, so I plan to sit in on his session and give him a great big hug afterward!

Follow me on the IOCDF blog to learn about the many inspirational and educational–and just plain fun–opportunities available at this conference.

Tuesday Q&A: Ethan S. Smith

Standard

It’s a big week — the week of the 22nd annual OCD Conference! It’s in Boston this year, where the International OCD Foundation (IOCDF) is based, and I’m so excited to be a part of it again. But enough about me.

Last year Ethan Smith, a Los Angeles-based actor, writer, producer, and director, delivered the conference keynote. Ethan described his fight against severe OCD, and even as he was talking about the darkest moments of his life he managed to make the audience laugh. In retrospect, he was able to see — and share — the humor in getting kicked out of residential treatment at the OCD Institute at McLean Hospital in Boston by deliberately hurting himself and pretending to pass out on a snowbank.

Ethan will be at the conference this year as well, so be sure to check out some of his sessions.

maxresdefault

Photo credit: Roberto Farren

Last year, after years of suffering from OCD, you gave the keynote presentation at the 21st Annual OCD Conference. What inspired you to apply for this huge honor — and long speech?

To be honest, I wanted to give the speech the minute I knew it existed. Probably desperate is the right word when describing how badly I wanted my story out there so others wouldn’t have to go through what I went through. I knew through that speech I could impact the most amount of people. 

During your presentation you shared candid videos of yourself engaging in ERP. You said you’d never shown this footage to anyone, and suddenly you were sharing it with a room full of people. How did you find the courage to do this? Why did you think it was important for the audience to see you in your lowest moments?
 
During the intervention portion of my treatment, I was fortunate enough to have one of the therapists at the OCDI playing an almost coach role in my life, in addition to my therapist. Because of this, although I was a victim of stigma many times before getting better, I never felt embarrassed about what I had gone through because I was able to discuss my concerns, doubts, fears, and pretty much everything else as they happened in the real world, in real time. I started to feel a sense of pride and accomplishment for what I had been through. Therefore, those videos represented a completely different person. They represented what I had been and where I had come from, not who I had become. It was a shell of my former self. But a very significant shell. It’s a side of OCD people don’t often see, especially the public. It’s a far cry from quirky hand washing or laughing about germs. Seeing how low OCD can take you is necessary to reach those who haven’t hit that bottom yet. To let them know that bottom exists should they choose not to pursue treatment or take it seriously. It’s the reality of severe OCD.

You’ve said you were born with OCD. How did you realize there was a name for what you were dealing with? When were you diagnosed?

It was only apparent I was born with OCD in retrospect. I went to my first therapist at age 6 but he did not diagnose me with OCD. I just had “issues.” I was a quirky kid with emotional issues. This was 1984. Did they even have an OCD diagnosis then? I didn’t realize there was a name for it. And to be honest, I didn’t really care. I don’t think I realized it was odd behavior until high school. I knew I wasn’t like other kids, and I definitely was unhappy much of the time, but I always thought, “That’s me. That’s who I am.” I don’t think I ever considered it was something else until I was actually diagnosed. I was diagnosed at age 14 after my first panic attack in high school. I refused to go back to school. I would just walk in the school and panic. After anything physical was ruled out, I went to a “top” psychologist in the Atlanta area and he diagnosed me with OCD. 

Ethan-and-Jeff-1000x355

Ethan and IOCDF director Jeff Szymanski

As a young adult you had a fear that you’d harm yourself, a fear so powerful you became scared of your own hands. Your life must have been pure torture at the point — you couldn’t escape your own hands, after all — but we know you’ve overcome this fear. How did you do it?
 
Just to clarify, most of my young adult life was spent being afraid of illness. Not germs, but a fever was meningitis, or a headache or a brain tumor. Constant trips to the doctor, I took my temperature upwards of 60 times a day, and carried thermometers with me at all times. The fear of harming myself didn’t come until I was 32 when I that trio of being off my meds, my girlfriend breaking up with me, and my grandfather dying happened. I just spun out of control and my OCD shifted based on a question a psychologist had asked me. He asked if I was impulsive. “Would you ever impulsively hurt yourself?” I thought the question was ridiculous. Of course I wouldn’t. And then I got in the car and thought, “What if I did? What if I just lost control and started hurting myself?” That’s when the OCD shifted. That was also the day I completely stopped taking my temperature for the first time in almost 20 years. 
 
As far as how did I do it, that’s a really big question. So I’m going to give you a very simple answer: I became willing to harm myself. I became OK with the idea that it might happen. I finally embraced the uncertainty and embraced radical faith and what my doctors were telling me.

After years of treatment — you attended the McLean OCD Institute (OCDI) but got kicked out and your mom even lived with you for a semester during college — you ultimately had to help yourself. How did you realize that if you were ever going to improve you had to take responsibility for your own recovery?
 
Ahhh, finally an easy question. When I was living in the crack house and hadn’t left the bed in six days. I hadn’t eaten, showered, barely drank any water. I realized no one was coming for me. Praying hard wasn’t enough. There was no magic that was just going to take it all away. I had to meet people halfway. I had to invest in myself what others were willing to invest in me. Only then, did I stand a chance. So I got out of bed and headed toward the fire. I never looked back.

Your parents were very involved in your treatment plan. Why should family members be a part of the recovery process? Is there such thing as too much family involvement?
 
I definitely think it’s individual in terms of too much involvement. But, what seems to be a very consistent pattern with OCD is that good parenting favors the OCD, not the child. The treatment for OCD is completely counterintuitive to parenting. Therefore, it’s a family disorder. The behaviors of the parents have to be modified in order to achieve long-term success. They must be just as educated about OCD, how it works, how it affects the sufferer, what snuffs the OCD out. I’m very passionate about imparting my position on family involvement. I firmly believe true success is impossible without the family/wife/caretaker component. Otherwise, after, let’s say, residential treatment, it’s just a dry addict going back to all his druggy friends he used to hang out with. Only a matter of time before he uses again. And once that snowball gets rolling, you’re back to square 1…or worse. 

Do you have any advice for someone considering residential treatment? Advice for not getting kicked out?
 
Haha! Yeah, don’t cut open your head and dive into a snowbank pretending to be passed out. Easy…Treatment is scary, and hard, and terrifying, and it most definitely gets worse before it gets better. But like I said in the keynote, the pain you invest now is worth the pleasure you’ll experience the rest of your life. We overcomplicate treatment. Treatment, at least in theory, is easy. Listen and say yes. That’s it! That’s all you have to do. Unfortunately, in order to do that you have to not listen to your own brain, what you believe to be your gut, all that you know. You’re most likely an incredibly intelligent, smart, creative individual and you probably know it. So, being told not to listen to the part of you that you believe makes you incredibly unique and special is a tricky proposition. Slowly but surely, however, you start to hear that the OCD sounds different than “you”; it becomes less tricky. It doesn’t define you or your uniqueness. In fact, in regards to OCD, you’re not special at all. It’s all the same tornado in all of us. Sure, it may suck in different stuff, but it’s the same. 
 
OCD is like math. In math there’s a right or wrong answer, and nothing in between. Treatment is exactly the same way in my opinion. Can you get better kinda sorta trying? Sure, but I think that’s still a wrong answer. Negotiate with OCD, surfing that area between the right and wrong answer, and you’ll never truly achieve the full life you’re looking for. Fully embracing treatment, especially residential, can potentially give you that right answer, that full life. Ever think you could have OCD and serenity at the same time? Yeah, me neither. But I do.ethansmith1

You’re able to joke and laugh about your OCD. How do you feel about others joking about it? How about people who claim to be “soooo OCD” on Twitter?

You have to have it to joke about it. Just like being Jewish and making a Jewish joke. Totally kidding. Listen, I think it’s a fine line. I know a lot of people that get really angry when the term “OCD” is misused or joked about. To be honest, for the most part, it doesn’t bother me, because in most cases it comes from a lack of education. When I hear it, I see it as an opportunity to enlighten and educate so that it doesn’t happen again. Anger or frustration regarding doesn’t yield an effective result. I know what cancer is and how it affects others. For the most part, you don’t hear a lot of cancer jokes. If you do, yeah…that person is a %*$&%*. But OCD, as with many mental illnesses, is still so misunderstood and grossly misrepresented. So can I blame the majority of people for saying they’re  “sooooo OCD?” No, but I can engage those people in a friendly way and redirect into something meaningful.

You recently shared some exciting news: You’re an IOCDF spokesperson! How did this come about?

Much like the keynote, I knew I wanted to be a spokesperson the minute I discovered they existed. It was just another avenue to share my experiences on a larger scale in the hopes to make a difference. As to why it happened or came about, I definitely expressed interest in becoming one to the amazing individuals at the IOCDF. I’m not known for being quiet or introverted, so I was vocal. But, in my heart, it was never about the “title” or becoming a “spokesperson.” It was about the work. It was about those suffering and not getting help. It was about no other child or adult suffering in the way that I did. That was/is my passion and my mission. But you can’t go on a mission from your couch, so I started talking to other people. Being open about my story. Allowing my former therapists to reach out to me as a resource and talk to their patients. And then becoming involved at the conference and speaking, et cetera. This work that I do, if you can call it work, is the most fulfilling part of my life.

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

Uncertainty is one of the greatest and most exciting aspects of life. Give it a big hug. Oh…and don’t cut your head open and jump in a snowbank.

Tuesday Q&A: Jon Hershfield

Standard

I think I first heard of Jon Hershfield on Twitter — we definitely had OCD in common, so I followed him and always loved what he had to say. And then I kept hearing about him and his first book, The Mindfulness Workbook for OCD, on OCD support pages on Facebook. People love that book! Then we ended up being situated near each other at a book signing at the OCD Conference in Los Angeles in 2014, but we didn’t have a chance to meet.H_Family_i

We went the entire conference without being formally introduced, and I thought I’d lost my chance to meet him. As my co-presenter/hotel-mate and I were walking away from the conference after it had ended, she saw Jon and his dad leaving a restaurant and shouted, “Hey, conference people! Hi, conference people!” She’s not as shy as I am, by a long shot.

So that’s when I finally met him, after the conference was over, and he was as delightful and sharp in person as he is on Twitter. Since he lived in LA, he was walking home to see his family–but he’s relocating to his first home, the East Coast, in June. His new practice, The OCD and Anxiety Center of Greater Baltimore, will be located in Hunt Valley, Maryland, and will open on June 22. He’s licensed in both Maryland and California, so he’ll continue to work with clients in California via teletherapy, as well as new in-person clients in Maryland, focusing on mindfulness-based cognitive behavioral therapy for OCD.

When you decided to go into psychotherapy, did you know you’d end up working so closely with patients with OCD? What is it about this disorder that inspires you to help people struggling with it?

I decided to go into psychotherapy specifically because of how much cognitive behavioral therapy (CBT) had helped me in my own journey living with OCD. When I was in the thick of it (both the worst part of my OCD and the hardest parts of treatment), I began contributing to online support groups. I spent a lot of time reading and responding to emails from other OCD sufferers and discovered that processing the stories of other people with OCD was really helping me better understand the way my own OCD mind works. It was with the support of my wife, my parents, and my therapist that I decided to depart from a career in entertainment and go to graduate school for a masters in clinical psychology. I knew that all I wanted to do was CBT for OCD and actually hit up Dr. Michael Jenike for the recommendation letter in my graduate school application. So perhaps I am biased towards working with OCD sufferers because of my personal connection to the disorder, but I also like to think that people with OCD have truly special minds capable of doing amazing things. They have access to a spectrum of thoughts and creativity that is both awe-inspiring and overwhelmingly painful at the same time. Suffering occurs as a result of not really understanding how that kind of mind works and so using ineffective strategies to try to change it. The idea that we can write our own instruction manuals to better operate this OCD mind is simply fascinating to me.

Have you ever worked with a patient with a very severe case of OCD? How did you work through it?

I’ve worked with several cases of what I would describe as severe OCD. In my time at the UCLA Child OCD Intensive Outpatient Program, we only saw kids in the significant-to-severe range, and part of the reason we were able to break through the severity barrier was by providing several hours of individual CBT several days/week and incorporating the use of group treatment, parent education, and psychiatric medication management. In a simple private practice, time and resources are more limited. You typically see the OCD sufferer for a little less than an hour once or twice a week. So making progress in a severe case involves a combination of wise time management in session and the use of collateral resources (e.g., working closely with the client’s psychiatrist, bringing the family or spouse in for psycho-education). Sometimes the inclusion of home sessions can make a big difference as well. Severe OCD is as treatable as moderate OCD, so long as it is the OCD that is presenting the primary problem. If depression, for example, is getting in the way of treating the OCD (e.g., by depriving the sufferer of motivation), then that may need to be addressed first. In the end, homework and medication compliance are probably the biggest predictors of whether a severe case will become a moderate or mild case. Of the clients I have seen progress from the darkest depths of OCD to the greatest health, the thing they seem to have had in common was the willingness to let go of the idea that you have to wait to get better before pursuing the things you value (relationships, work, creating art, etc). In those cases, my job was mostly just to discourage waiting and then the exposure and response prevention (ERP) came naturally from that decision.

I’ve met several people with OCD over the years, and we all think our own obsessions and compulsions are the worst. We think, “You’ll be fine — all you worry about is inadvertently bringing down civilization because you didn’t wash your hands thoroughly enough. But obsess about killing my own child.” How do you respond to patients who have this mindset, that they’re somehow the exception who can’t be treated?

I think the next DSM should include a criterion for diagnosing OCD that says the person must have a belief that his/her obsession is unique, worse than others, and less treatable. When patients tell me this, I try to remind them that it’s not useful information. If it’s true that this or that obsession is something no one has ever obsessed about and we have to be extra special creative in constructing the treatment, it has no effect on the reality that the OCD is treatable and it’s treatable with CBT/ERP. Overly manualized treatment won’t take you very far. You have to construct the CBT to fit the OCD. So we don’t have to prove anything about how bad the obsession is. We just have to see where the behavior (physical or mental) is keeping this obsession afloat, target it, and change it.Mindfulness

Your first book, The Mindfulness Workbook for OCD, has practically been a runaway success in the OCD world. People love it. What inspired you to write it?

People have been incorporating mindfulness with CBT for a long time. ERP is about putting yourself in the presence of unwanted thoughts and practicing allowing them to be there without pushing them away. This naturally lends itself to mindfulness. When I was approached by New Harbinger to submit a proposal for an OCD book, The Mindfulness Workbook for OCD just made sense. I’m extremely grateful for the opportunity and love that I was able to reach so many OCD sufferers in a format like this. I was used to writing blogs and, well, really long-winded emails, so a book was quite the learning curve!

When you’ve gotten feedback on the book, is there any one section or technique that seems to resonate with your readers? 

Honestly the part I hear about the most is the preface to Chapter 1 in which I attempt to describe the OCD experience overall, what it’s like from the inside. Many self-help books have examples like “Bob’s story” and so on, but I wanted to have something that every reader with OCD would get, so I put one example and called it “Your story.” This is where I was thinking most personally about the material and I think that must resonate with readers. People also seem grateful for the specific descriptions of mental rituals, which has been scarce in OCD literature so far. Overall I think the book’s strongest element is that it looks at mindfulness not as an alternative or a stand-alone tool, but as something that can be used to enhance OCD treatment in harmony with cognitive therapy and ERP.FamilyMember

The best way to help someone through OCD feels so counterintuitive: Don’t reassure the person, and don’t make it easier for her to follow through on her compulsions. That’s why I think your second book, When a Family Member Has OCD, is such an important title. What advice do you give family members and other loved ones who are struggling to understand their role in the recovery process?

Family members and other loved ones have to walk a very tricky line between supporting the person with OCD that they care about and also recognizing that this person needs to do their own work to get better. I hope to drive the point home that you can make hard choices to help your family member with compassion and without cruelty. In “When a Family Member Has OCD,” I highlight four potential steps that can be taken to approach this. (1) Identify the compulsions, not the person, as the problem. (2) Invite collaboration on addressing the problem. (3) Interrupt the OCD cycle with permission (this is where “don’t reassure” comes in). (4) Integrate healthy behaviors through modeling non-OCD responses and embracing uncertainty of your own.

I have what is (sometimes controversially) referred to as pure O because I never performed the obvious outward compulsions like excessive hand-washing or checking and rechecking. Do you have a different treatment method for folks with pure O?

No. The treatment for OCD is CBT, a collection of strategies that includes cognitive restructuring, behavioral modification (ERP), and mindfulness skill development. Mental behaviors, though they may appear automatic and elusive, are nonetheless behaviors, which makes them available for targeting and treating. OCD sufferers tend to notice thoughts that others may be more likely to overlook or find unimpressive. How they address this “noticing” can come in many different forms. But I think it’s important that people recognize something like hand-washing is a physical behavior a person engages in when her mental rituals have failed to produce the relief she’s seeking. As a clinician, I might be able to get her to stop compulsively washing, but if I don’t also address the compulsive mental attempts to feel clean, relapse is inevitable.

Speaking of pure O, what do you think of the name for this type of OCD? Do you, for lack of a better word, believe in pure O?

As a clinician, it’s a truism that there is no “pure O.” There’s nothing pure about it.  You have obsessions, you do compulsions (seen or unseen), it causes disorder in your life and so, you have OCD. That is all. Some people believed for a period of time that there were people with obsessions who were not doing any compulsions and they called them “pure obsessionals” and now we know they were mistaken. In fact, when you consider that the very nature of an obsessive thought is that it is assessed as intrusive and unwanted, that initial assessment is in some ways a compulsion right there, an attempt to disown and dismiss the thought. So if you’re treating OCD and you’re using the term “pure O” to describe a manifestation of OCD, reasonable educated clinicians will frown on this. And for good reason. If you call it something other than OCD, your patients will expect some other kind of treatment, and may not do what they need to do to get better.

All this being said, there is a large and beautiful community of OCD sufferers communicating internationally on the internet. These sufferers have used social media to form online support groups and these groups naturally form sub-sections. These subsections reduce the sense of isolation that sufferers feel because they know the people they are communicating with think like they do. For those who engage in a lot of physically noticeable rituals, like washing, cleaning, arranging, and checking, there is the sense that people get it. It’s on TV, and it looks like what people call OCD when they use the word on TV. For people who struggle with primarily mental rituals and intrusive thoughts about violence, sexuality, relationships, religion, morality, and hyperawareness–what gets called “pure O”–there is a sense of being different from the “washers and checkers,” so to speak. There is this feeling of being poorly understood, overlooked, and often misdiagnosed. While I’m the last person to promote tribalism, this sense of togetherness under some name that identifies the lack of physical rituals feels important to the “pure O” sufferer. When I was seeking support on the Internet, I knew right off the top that I didn’t want to be in a digital room of people concerned with things I wasn’t concerned with. I wanted to be in the company of people who feel like they can’t stop thinking about terrible things all the time, people like me. Somehow I knew to seek out a site called “pure_o_ocd” even though I knew the name couldn’t possibly be true.

So does “pure O” exist?  Well, it depends who’s using the term and what they think it means. If it means OCD with mental rituals and it helps you to have a name that makes you feel less alone, then it exists. If it is some therapist’s marketing ploy or a way to describe a manifestation of OCD thought of as “pure” from compulsions, then no. As for other names that would work better, I haven’t been able to think of any. One day, when stigma around mental illness is a thing of the past, perhaps there won’t be a form of OCD that feels marginalized by society and there won’t be any drive to have a special name for it.

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

Don’t rely on one piece of advice. If you can access and afford to see an OCD specialist, listen to what they have to say and do the work, all of it, even if the work makes very little sense in the beginning because it’s such the opposite of what you want to do sometimes. If you can’t access a therapist, read several books on OCD, utilize a workbook, educate yourself about the disorder and teach yourself the tools to master it as best you can. Join a support group, follow an OCD blog, go to an IOCDF conference, connect with other OCD sufferers. Take your own advice and pool it together with the advice of people who know about OCD. You’re not alone so don’t be alone.

Tuesday Q&A: Shala Nicely

Standard

It’s Tuesday, and you know what that means—we have a Q&A! This week we’re hearing from Shala Nicely, whom I first heard of when I pitched a blog post to the International OCD Foundation (IOCDF). My superduper so original idea was to draw parallels between overcoming OCD and the lyrics from “Let It Go,” the hit—and ubiquitous—song from the Disney movie Frozen. My contact there said they were already going to post a piece by Shala, but they’d be happy to get my take on it, too. Well, when I read her post I knew there was nothing I could add. It was brilliant.

Shala and I met in person on the dance floor at the OCD Conference in July 2014. If you’re not already planning to go to this year’s conference in Boston, consider it! Meeting amazing people on the dance floor is just one of many reasons to go.

Shala-JeffCOLOR

Shala and Jeff Bell

Not only do you work with patients who have OCD, you have OCD yourself. How did you first realize you might have OCD, and when were you diagnosed?

I always knew that my mind seemed to behave a little differently than everyone else’s, but I didn’t know it was OCD until my late 20s. At that time I was in general therapy, and I happened to mention something about liking the number 4. The psychologist asked a few more well-chosen questions and diagnosed me with OCD.

Once you realized what was going on, how did you go about treating the disorder?

Well, getting treatment wasn’t easy. I saw a couple of different therapists after getting diagnosed, but none of them mentioned exposure and response prevention therapy (ERP). So, of course, none of what they offered helped me, so I gave up on therapy. Eventually I tried medication, which worked wonders for me. Unfortunately, after taking the drug for a number of years I developed a rare side effect and had to stop taking my SSRI. My OCD came back almost immediately. I didn’t hear about ERP until I attended the IOCDF conference in 2010, more than a decade after I had been diagnosed.

In hindsight, I did not take enough responsibility for my own mental health in the years after I learned I had OCD. Granted, I didn’t have the information that’s available today on the Internet. However, I could have done some reading to find out what kind of treatment I needed. It never crossed my mind to do so because I had this implicit trust in the medical community. I’d received such good care as a child after being in an awful car accident that I just trusted that I could show up at a therapist’s office and receive the care I needed. But that didn’t happen. And that’s not all the therapists’ fault—I could have become a better advocate for myself and perhaps received the right treatment faster.

You work with patients with OCD, and you have OCD yourself. How did you decide to dedicate to helping others with the same disorder you’ve struggled with yourself?

When I went to the IOCDF conference in 2010, I had already been thinking about changing careers. I was so astounded to learn about ERP at the conference, because I had been in and out of therapists’ offices since age 16 with OCD-related issues, and I had never heard of ERP before. Clearly, there were not enough therapists doing this type of evidence-based therapy! So I decided that would be my career change—I would become an ERP therapist. I signed up for classes when I got home from the conference and started graduate school the next month. It’s the best career move I’ve ever made, because now I can help people with OCD get the right treatment a whole lot faster than I did.

Beyond-The-Doubt-clr-web

Although I learned how important it is to face my fears in order to overcome them, I never went through ERP with a therapist. To be honest, I sometimes regret foregoing it. How do you encourage hesitant patients to engage in ERP?

I’ve done most of my ERP on my own as well. After the conference I did group therapy to learn how to do ERP, and then I worked through my hierarchy on my own and with the self-help phone support group I started after the conference.

I encourage people who are hesitant to engage in ERP to identify their Greater Good, as my Beyond the Doubt co-founder, Jeff Bell, describes in his book When in Doubt, Make Belief. Once someone can identify how doing ERP helps them enhance their own sense of purpose and/or how it can help them be of service to others, they often find the motivation needed to face their fears and ultimately take back their lives from OCD.

Believe it or not, I still haven’t seen Frozen–and I have two little nephews. However, like most of America, I’ve heard “Let It Go” many, many times, and I just love your blog post detailing its similarities to your journey with OCD. Did it hit you right away when you saw the movie or heard the song?

From the beginning of the movie, I was struck by the similarities between Elsa’s “powers” and what all of us with OCD experience. Then, when Elsa started singing “Let It Go,” I was blown away by the lyrics—she was singing about me and my OCD! I grabbed a note pad, started taking notes, and then wrote the Aha! Moment that night right after watching the movie.

I love all of the other “Aha! Moments” you’ve written about on your website, too. Out of all those moments, did you have a bigger “aha” with one than the others?

I think the Aha! Moments about “the voice” of OCD and the Stockholm syndrome resonated most with me. My OCD can be so incredibly vicious, and self-compassion has been a wonderfully effective complement to ERP in helping me to quiet, and sometimes silence, that nasty voice.

Keynote Preso 2

You were the 2013 keynote speaker at the OCD Conference in Atlanta. After keeping your OCD to yourself for so long, what made you decide to open up to such a large group?

I had three reasons for telling my story:

  1. I wanted people to understand what it feels like to have OCD: the gripping, unrelenting horror of a nightmare that OCD can cause. Sometimes OCD gets portrayed as “cute and quirky” on TV and in movies, and as you and I both know, there is nothing remotely cute about our disorder. I also wanted people to understand how important it is to get the right treatment as soon as possible—how OCD can morph, and grow, and stake its claim on more and more of the territory of your life the longer it goes untreated.
  2. I am also passionately committed to reducing the stigma that can be associated with mental illness. Would I be ashamed to admit I had asthma? Diabetes? Cancer? No. So why would I be ashamed of having an illness that originates in my brain? Why would that be viewed any differently than my having an illness that affects other parts of my body? Giving the keynote was a way to publicly embrace having OCD and to send the message that having OCD or any mental illness is not shameful. Reducing shame is so important to me. Shame keeps people from getting the help they need to reclaim their lives.
  3. Giving the keynote was my ultimate exposure. OCD had been telling me for so long that bad things would happen if I told anyone what went on in my head, and I knew I would strip the disorder of so much power if I did exactly what it was telling me not to do.

Do you have advice for someone wondering how to tell their friends and loved ones about their OCD symptoms? I had such terribly wrong and embarrassing symptoms I couldn’t imagine telling a soul.

I think the decision if and when to share specific OCD symptoms is very personal. I’m fine sharing pretty much all of mine, as breaking Rule #1 by sharing my obsessions is part of my recovery journey. I’ll be sharing even more of them in the book version of Is Fred in the Refrigerator?, which I’m currently writing. But I don’t think everyone needs to share all of their symptoms to get better. Sometimes telling a partner, best friend, or trusted therapist is enough. I think it’s important to educate the person(s) in whom you confide so that they understand OCD and can support you appropriately. I often recommend that my clients’ family members read Loving Someone with OCD for this purpose.

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

Never, ever give up. You can take your life back from OCD.

Tuesday Q&A: Elizabeth McIngvale

Standard

I’m so pleased to be hosting International OCD Foundation spokesperson Elizabeth McIngvale this week! When I first started researching OCD, suspecting that I might have it myself, I was comforted to see Elizabeth’s face on the IOCDF home page. It made me realize anyone can have OCD, that it doesn’t discriminate, and that there is hope. While I didn’t identify with her symptoms—she struggled with the compulsion to wash her hands excessively, taking hours out of her day—I was glad to see a face to OCD, even just one.

Elizabeth inspired me so much I asked her to write the foreword to my book, Being Me with OCD. (Thanks again, Elizabeth!) Her generosity and commitment to spreading awareness certainly don’t end there, but let’s start at the beginning.

Liz McIngvale

When you were diagnosed with OCD at age 13, the doctor told you and your parents your symptoms were too severe to be treated. That must have been devastating news. What made your parents persevere and get you the treatment you needed?

It was absolutely devastating to hear and really drained us of most of our hope. However, my parents just wouldn’t take this for an answer and knew there had to be more options; they knew there had to be hope. So, they kept searching. Years went by where we went from one provider to another searching for the help that I so desperately needed. It wasn’t until my dad opened the Houston Chronicle (our local newspaper) one morning and read about the Menninger Clinic possibly coming to Houston. In that article they spoke about the OCD clinic that they had at the time. My dad immediately picked up the phone and soon I was scheduled to see a psychiatrist who was commuting back and forth between Houston and Topeka for Menninger. She saw me for a few visits and made the recommendation to my parents that I needed to be in an inpatient treatment center for my illness due to the severity.

You were so young—just 15—when you checked into the Menninger Clinic. Were you scared, or was it scarier to continue living as you had been, with your life taken over by obsessions and compulsions?

I have never been as scared and fear-ridden as I was on February 5, 2002. Just two days after my 15th birthday my parents and sister sat down and told me they were taking me to the Menninger Clinic (a clinic I knew a lot about). I didn’t want to go and in fact tried to flee and avoid the situation. However, my parents were prepared and had multiple plans in place in the case that I tried this. Hours later we arrived in snow-covered Topeka, Kansas. I was sick to my stomach (I vomited while there) and feared that my parents would leave me in that hospital forever. My mom promised me that I would get to come home as soon as I got better…so I thought I would never leave since I didn’t believe there was any hope for me or chance that I could learn to manage my symptoms. I had only had failed treatment prior so I didn’t know that there was effective treatment for my OCD. It was scary, lonely, and intense—but I would do it all over again 100 times if needed, for Menninger, the therapists, and the other patients forever changed my life.

How did you transition from inpatient care at Menninger back into real life? How did you deal with any setbacks you may have had?

The transition from Menninger back home was exciting but proved to be tough. I was so excited to go home and feel “normal” again. I could do things I hadn’t done in years—take a shower in 5 minutes, wear different color clothes, etc. However, I was 15 and didn’t realize the importance of relapse prevention and continuous therapy. I slowly declined and didn’t stay on top of my treatment. Two years later I ended up back at Menninger for a second time; this time the clinic was in Houston. It was a learning process for me and still is. The transition from residential to home is tough, especially if you don’t have your schedule lined up, your aftercare in place, and goals to keep you motivated. I have learned a lot over the years about OCD treatment. The one most important thing I have ever learned is that you have to learn to be your own therapist. You have to be able to employ the tools you have learned on your own, when you need them, and that is what helps ease transitions for me because they can be really tough—especially when you go from a team of providers to feeling alone. It’s important to know yourself and what you need, when you need it. Above all—the most important thing is your safety. If you are ever feeling so overwhelmed or alone that you are not sure you are safe (thoughts of suicide) you should call the National Suicide Prevention Lifeline at 800-273-8255, call 911, or go to your closest emergency room.

How do you explain your hand-washing compulsion to people who don’t understand OCD?

It’s hard to explain anything to someone when it is foreign to them. The best way I can explain my OCD is that I experience these unwanted intrusive thoughts that I would do anything to get rid of; when I engage in compulsions, whether it’s hand-washing, reassurance seeking, etc., I feel immense relief. However, that relief is only temporary and long-term it makes my OCD worse. For my hand-washing rituals I think those are the most obvious to others as people can visibly see when I wash my hands and/or when my hands are raw and chapped. There is no easy way to explain rituals, other than I know they don’t make sense and I know that I shouldn’t do them but this immense amount of anxiety leads me to engage in the rituals in order to get relief from terrible intrusive thoughts. The rituals can quickly consume your life and strip you of your happiness. They are debilitating and exhausting.

Although you’ve dealt with relapses, you’ve come incredibly far since your diagnosis. Watching video footage of yourself in your worst struggles must feel like watching an entirely different person. What do you attribute your recovery to? And how do you deal with a hint of a relapse?

I still live with OCD every day. Watching the videos can be eye-opening but I know that could have been me yesterday and could be me tomorrow. The most important thing for me is to live day by day and remember the tools that help keep my OCD managed. I still do rituals and certainly still live with intrusive thoughts every day of my life. However, I have learned how to best manage my OCD for me and what that looks like. I still see a therapist once a week and when my OCD is kicked up I know to step up my therapy and to proactively do the work that we know works—exposure with response prevention (ERP).

You’re one of the most well-known advocates out there: Your first TV appearance was on Dr. Phil, and you’ve since been on Good Morning, America, The View, ABC News, and the VH1 OCD Project, among other national programs. Why do you think it’s so important to spread awareness of OCD?

Thank you very much! To me it has always just been about making a difference and helping others. It was hard to share my story and open up my personal life to the world but I knew if it helped one person, it would all be worth it. The emails, phone calls, and messages have confirmed why I am so public about my OCD and why I do the work that I do. I think for OCD and all mental illnesses they need faces, stories, and real people sharing their real experiences. This is the only way anyone will really care, listen, and understand. The more of us who are willing to be open about our OCD and/or our mental illness the more we will wipe away the stigma that too often surrounds mental health issues.

What-Does-OCD-Look-Like_Poster

You were the first national spokesperson for the International OCD Foundation, and you were only 17. How did that come about?

I had begun speaking about my OCD on local and national shows and they asked if I would be willing to be their national spokesperson and put a face to the illness. This opportunity changed my life, career, and perspective on mental illness, OCD, and stigma.

What advice do you have for someone struggling with how to “come out” as having OCD, especially teenagers?

I think first and foremost it’s important to read about the illness and understand what OCD is and what the proper treatments are for OCD. Understanding these things first will help you be able to better explain the diagnosis and treatment available. I think you should always start with family/loved ones as they are often closest to you and already may recognize/know that something is going on. I would explain what you have been going through and give them some specific examples. I would also bring information with you and direct them to the International OCD Foundation website and affiliates so that they can learn more about the illness. I think we often assume that when we tell people there is going to be a negative reaction, but what I have found and what I often hear is that the reaction isn’t as bad as we anticipated and often we are offered empathy and support from people who care about us.

Tell us more about the Peace of Mind Foundation

The Peace of Mind Foundation is a non-profit foundation that is dedicated to improving the quality of life of OCD sufferers and caregivers through research, education, advocacy, and support. We are a 501c(3) non-profit that works to enhance the lives of those impacted by both OCD and mental illness. We work to provide training and education for OCD to local organizations, schools, and all those interested. We engage in advocacy on the local, state, national, and international level through outreach events, speeches, and PR. We offer scholarships to the International OCD Foundation conference. And lastly, we run and operate the OCD Challenge website, which is a free self-help website designed for those living with OCD. The website is accessible anywhere in the world with an Internet connection and will be live in eight different languages by the end of the year. The website offers interactive videos and the content is based on the principles of ERP for OCD in order to guide individuals through education, intervention, and relapse prevention for their OCD.

You’re now a licensed therapist treating OCD. How does your own experience inform how you treat patients with OCD?

I think it gives me insight to understand the true severity of the illness and some of the complex issues that arise when you live with a mental illness. It does not make me any better qualified; OCD training is very specific and there are wonderful OCD therapists who do not live with the illness but are just as qualified, if not more qualified, to treat OCD than I am (my own therapists, for example). However, I think there is a connection and understanding that is deeper than knowledge—it’s about a lived experience we both share.

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

You are not alone, you don’t have to suffer in silence, and help is available. With the appropriate treatment (ERP or ERP and medication) you can gain control of your OCD and learn to manage your illness. Treatment is number one always, but the second thing I recommend is to meet someone else who lives with OCD. You can do this through the International OCD Foundation’s conference, support groups, or online groups. Understanding that there is help available and that you aren’t alone are in my opinion the two most important things to help you gain control of your OCD. Lastly, I would recommend giving back when and if you are ready. I have found some of my greatest healing has come from sharing my story and helping others in need with OCD or a mental illness.

Tuesday Q&A: Jenn Coward

Standard

image4Tuesday, Tuesday, Tuesday! It’s become one of my favorite days of the week. And this week’s guest is one of my favorite OCD awareness advocates, Jenn Coward. If I haven’t convinced you already how wonderful the annual OCD Conference is, maybe this interview will finally seal the deal. It’s a great way to make friends, learn about treatment, and feel comforted knowing you’re not alone and don’t have to explain what OCD is or clear up any misconceptions.

Jeff Bell introduced me to Jenn on the first night of the conference, and we hit it off immediately.

When we met you told me the funniest story about one of your compulsions, avoiding stepping on sidewalk cracks, which you were still struggling with at the OCD Conference in 2012. When you ran into someone at the 2014 conference, she said, in front of several other people, “I’m so glad you got over your crack problem!” Of course, the “crack problem” wasn’t a laughing matter when you were struggling with it. How did you manage to stop avoiding sidewalk cracks?

It is definitely a story I won’t forget. I was attending the 2012 International OCD Foundation Conference in Chicago and a couple of new friends I met asked me about some of my compulsions. I had rarely discussed openly avoiding sidewalk cracks because over the years I managed to become really good at avoiding sidewalk cracks and making it look like I wasn’t trying to avoid them. Since we were honestly discussing our compulsions, I decided I should talk about it. As good as I had become at making it look like I wasn’t avoiding the cracks, I would avoid places if the sidewalks or tiles inside malls had a lot of cracks. I was missing out on things because of my fear and compulsion.

The conference and friends I had made really inspired me to work hard in ERP and challenge my fears. I met so many people who had made such progress and were successfully overcoming their compulsions, I wanted to as well. When I got home from the conference I read a few books including Jeff Bell’s When in Doubt, Make Belief and Shannon Shy’s It’ll Be OK: How I Kept Obsessive Compulsive Disorder (OCD) From Ruining My Life. These books had some great strategies I wanted to try. I started slowly with every day trying to step on at least one crack. It was really difficult because I immediately wanted to go back and fix it by retracing my steps and not stepping on the crack. The first few times, the anxiety and bad thoughts were unbearable and I felt like giving up. After the first few weeks, though, the anxiety started to not be so strong. It took almost three months before I could move on and step on two cracks a day, but I was making progress that I could see and it gave me confidence to keep going. Eight months later, I was consistently stepping on cracks and the anxiety and bad thoughts were hardly there. I knew I was winning this war on OCD and it made me so happy.

Can you tell us why you wouldn’t step on cracks?

I’m not really sure how this compulsion started but I was walking to work one day when my OCD symptoms were starting to get worse and really take over my life. I remember stepping on a crack in the sidewalk and all of a sudden an image popped into my head of my mom being in a horrible car accident. It scared me so much that I just stopped walking and stood there for a minute trying to figure out why I was thinking of this. The anxiety started to build up and for some reason this thought about needing to avoid sidewalk cracks came to mind. Over the course of the next few days, I noticed if I stepped on any cracks, I would get these mental images of someone in my family being harmed and my mind kept telling me it was my fault, I was causing this to happen. The only thing that helped decrease the anxiety and keep these thoughts from overpowering me was this constant voice in my head telling me to avoid the sidewalk cracks. If I avoided the cracks, my family would be okay. Before long I was avoiding every crack, and if I accidentally stepped on a crack, I had to go back to the very beginning, meaning wherever I was walking from, I had to go back and walk the “correct” way—not on any cracks—so my family would be okay. A few times I tried to ignore the anxiety and bad thoughts, but they became so frightening it was just easier to give in to the compulsion so I could have relief from the anxiety.

You went on Dr. Jonathan Grayson’s Virtual Camping Trip. Why did you go so out of your comfort zone?

A lot of people I met at the 2012 conference suggested it to me. I wasn’t going to go because it sounded really uncomfortable, but many of my new friends I had just met were doing it so I figured I would go and see what it was about. It was the most terrifying and exhilarating ERP experience I had ever had at that time. Here we were walking around in this big group around downtown Chicago at night, and whatever Dr. Grayson told us to do, we did. At the time it made no sense to me that I would do these things–kick car tires, yell at cars to “crash and burn,” or play in a dumpster–but here I was doing it. After the fact I think I realized I did it because we were in such a big group so it felt more comfortable and Dr. Grayson didn’t give us time to stop and think through what he was telling us to do. This virtual camping trip made me realize that ERP was really going to be what helped me get over my compulsions.

How did you realize you had OCD? For me it wasn’t at all obvious and it took several years before I was diagnosed.

For a number of years I didn’t know I had OCD either. I now realize I first had the onset of symptoms in my pre-teen years. It wasn’t until I was almost fourteen, though, that I really started to experience a lot of OCD thoughts that I developed compulsions to deal with. I kept it all to myself because I was scared and confused. I didn’t understand why I was having these thoughts and why I needed to perform these compulsions. I was scared to tell anyone because I couldn’t understand myself what was going on. I really tried to perform my rituals in secret so my family wouldn’t see what I was doing. I would be up really late at night performing these compulsions and I couldn’t go to bed until I had done them perfectly. Over time I was getting really stressed by the growing list of compulsions I had to perform. I finally confided in a friend at school one day when it was all becoming too much. I started to explain to her my thoughts and compulsions. I was so surprised to hear her tell me she thought she knew what I may have and told me to go home and look up obsessive-compulsive disorder. At the time I didn’t know she had been living with OCD for a number of years. I went home that night and looked it up in this big medical journal we had, and there were three pages on OCD. I remember sitting there reading it and I started to cry from relief. The obsessions and compulsions it was describing were what I was experiencing. I realized it was time to talk to my parents and look into going to see my doctor.

JennandShannon

Jenn with Shannon Shy

Can you share some of your other obsessions and compulsions? What steps did you take to get some control over them?

When I had a relapse four and a half years ago, my obsessions and compulsions were different from when I was first diagnosed as a teenager. Everything had a place and it always had to be in that place. If anyone moved something, even a tiny bit, I would know and I had to fix it. Since I had a fear of harming people, I was scared to drive and never got my license because of this.

One of the most difficult obsessions that I had besides sidewalk cracks was a fear of certain numbers: Six, twelve, any multiple of those numbers (24, 36, etc.), or any combination of numbers that added to six or twelve. I was paralyzed by this fear of numbers. Everything I did, I had to make sure it didn’t happen at one of these times or dates. For example, if I needed to wash my hands but it was 1:06 p.m., I would wait until 1:07 p.m.

ERP was how I eventually got control over these compulsions. I started small with doing things like intentionally moving something like a magazine so it wasn’t in its right place and I would try and go as long as possible before I had to fix it. At first it was only a minute, but over months of constantly working on this compulsion, I could go hours without having to move it back to its right place and eventually I could have multiple things out of place at one time and my anxiety was still decreasing. This is how I got control over all my compulsions.

Some fears and compulsions took a long time to get control over like my number phobia, but I approached them all the same way. I can honestly say my number phobia took almost two years for me to get control over.

I know you’ve made huge leaps in recovery in the past few years, and you didn’t waste any time before getting into advocacy in your community. Tell us about your awareness-spreading efforts and how you got into them.

I’m currently a guest speaker for a high school mental health awareness program that is called Talking About Mental Illness (TAMI). It’s a three-day program for grade 11 students. A mental health nurse comes in and educates students about different types of mental illnesses, the symptoms, and where they can go locally to get help. I share my personal experience with OCD. I also speak at our local college to many different programs, specifically the ones that have a mental health element (nursing, child and youth worker, personal support worker.) I’ve also done a lot of local media for OCD Awareness Week and Bell Let’s Talk Day, a mental health awareness day in Canada.

I got into awareness spreading because I wanted to make a difference and turn what I had been through into something positive and meaningful. When I had learned about Jeff Bell’s Adversity 2 Advocacy Alliance and what they did, it made sense to me. So many of the people I met who were better became advocates and shared their own personal story. It seemed to be so therapeutic for them and they were helping others by sharing their story. After my relapse, I remember being in a very dark place, feeling hopeless. I was sure I would never get better. Then I read a book that changed my life. It was Jeff Bell’s memoir, Rewind, Replay, Repeat. I remember sitting there when I finished reading it and thinking there was hope. His book provided me that hope when I needed it most. I realized if his book could do this for me, sharing my experience could help someone else.

image1You’ve been planning a rather large event called Stand Up to Stigma on April 24. Tell us more about that.

Stand Up To Stigma is a fund-raiser and mental health awareness night. I felt like our community needed an event where we could come together and have an honest, open conversation about mental health. I wanted to address the stigma that still surrounds mental illness but more importantly have people within our community share their story of living with mental illness so others could see they weren’t alone, there was hope, they could get better. Specifically youth mental youth is a big topic for our event. The statistics are frightening. Three out of four children and youth with a mental health problem in Canada will not receive treatment. Three times as many youth (15 to 24 years old) die by suicide than by all forms of cancer combined. We are failing our youth and the only way we can address it is by starting the conversation. All money raised will be going to a Canadian mental health charity called Partners for Mental Health.

We met at the OCD Conference in 2014, but it wasn’t your first time there, and it certainly won’t be the last. What keeps you coming back year after year?

It is the most fun I have all year. There is nothing quite like being with hundreds of other people who understand you. I have made great friends and every year there are workshops where I learn so much more about living with OCD. I know I would not have recovered as well from my relapse if it wasn’t for these conferences. They have provided me with so many tools and friendships to get better.

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

Don’t give up, there’s hope. When it seems that getting better is impossible, believe that it is possible, because it is.