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.
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.
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.
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.
Alison Dotson 