The IOCDF blog often shares personal stories from those in the OCD community about their experiences living with OCD and related disorders. Today’s entry from featured blogger Alison Dotson focuses on the process of sharing her personal recovery story, and navigating the fact that treatment can look so different to different people.
Being an advocate in the OCD community has fulfilled me more than nearly anything else I’ve done in my life — helping others come to terms with their intrusive thoughts is my way of giving back after struggling myself for so many years.
But I’ve always had a fear, sometimes in the back of my mind, sometimes looming in the forefront, that I’ll somehow make someone else’s journey to recovery worse, not better. Why? Because while I firmly believe in the effectiveness of exposure and response prevention (ERP) therapy, I didn’t undergo this treatment with a therapist myself, and let’s be honest: No one likes it when someone basically says, “Do as I say, not as I do.”
My goal in telling my story has always to been a voice for this misunderstood disorder, not the voice. I am only one voice, one perspective, and one source of advice. Looking to many different people for help and comfort can be a huge help in recovering from OCD, with each voice contributing something unique and different to the conversation. It’s important to listen to your psychiatrist, therapist, parents, advocates, and so on, but perhaps for all different reasons. My goal in being just one of these voices has been to help people with OCD realize they’re not alone, to convince them they’re not bad people because they have bad thoughts, and to give them hope. It hasn’t been to say, “I did it this way, which is the only surefire way.”
Several weeks ago I got an email from a concerned mother: Her young adult daughter was struggling with sexual obsessions, and a friend of mine had recommended the family get in touch with me because I’ve had some terrible sexual obsessions and managed to work through them. This young woman — I’ll call her Melissa — felt completely alone and hopeless. Could she really ever stop obsessing so much, and could she ever forgive herself even if she did? She couldn’t see the point in continuing ERP with her therapist and was thinking about quitting.
I told Melissa’s mother I’d be happy to chat with her daughter sometime. As we talked over coffee later that week, Melissa asked if I’d done ERP. I paused for a second, and then said, “No, I didn’t.”
“My mom said she bet that you had, and that you probably would tell me to keep going to ERP.”
I said, “Well, I’m not not telling you to keep going.” I told her I wouldn’t be where I am today if I hadn’t applied the tenets of ERP to my life, and that I was able to do it without a therapist — but that doesn’t mean everyone can. Part of the reason I was able to face many of my fears on my own, as they arose naturally in my life, was that my medication worked so well for me. It eased my anxiety and treated my depression so effectively I felt more empowered to do what I needed to do, even without a therapist guiding me through it.
Melissa’s mother emailed me that night: “Melissa called me on the way home and said, ‘Mom, she struggled with the exact same thing I’m obsessing over!’” This was great news; she already felt less alone and more hopeful. But a few days later, her mother emailed me again: “After you told her you did ERP on your own, she decided to take a break from sessions with her therapist.”
Ah, crap. OCD caused me to fear many things in my life, nearly all of them irrational. But my fear that telling my story would actually do harm instead of good had been realized: I’d inadvertently encouraged Melissa to stop therapy even though her medication wasn’t as effective as mine, and she was at a really low point. Thankfully, none of this lasted long. Melissa wrote to me herself and said she wanted to get better and decided she should continue ERP. Yes, I told her, go back.
As we chatted a little more, something else came out. Melissa was worried that if she got better and her obsessions didn’t bother her anymore it would mean she really was a bad person. If her obsessions didn’t make her nauseated anymore, might she act on her thoughts? Aha — this was a light bulb moment.
Nope, that’s not how OCD (or OCD treatment) works. I once felt the exact same way, so I understood her fear very well. You can get over the guilt your obsessions cause while also accepting that they’re just thoughts. This in no way means that you condone taboo behaviors — it just means you learn to not let the intrusive thoughts rule your life.
Last summer I presented a talk with Lee Baer, author of The Imp of the Mind, at the IOCDF’s Annual OCD Conference in Boston. I told the room full of people how awful my taboo obsessions had been, how they made me believe I was destined for hell — and even if that weren’t really the case, the hell on earth OCD caused was punishment enough.
Again, I hesitated when I told the audience that I hadn’t done ERP with a therapist. I had more qualms about saying that out loud than I did about some of my sexual obsessions! After I sat down and Dr. Baer had stood up to talk, he said, “I just want to correct something Alison said.” Oh god. How embarrassing. I held my breath as he continued. “Alison said she chickened out of ERP, but she wouldn’t be where she is today if she hadn’t done the exposures and resisted the urge to do a compulsion on her own.”
Whew. Honestly, that’s what I believe, too. But it can be hard to say that and not feel like a hypocrite, at least a little. How can I tell others that the pain of ERP is only temporary and worth it to ease the more permanent pain OCD causes? Well, I can tell them this: ERP isn’t easy. It isn’t. But the first time I was left alone with my newborn nephew wasn’t easy, either. Those three hours crawled by. Nothing I did to overcome my obsessions and my almost crippling fears was easy, but my life is better now.
When I was first diagnosed I read several books and pulled tidbits from each that spoke to me and helped me through the anxiety my obsessions caused. I applied advice from my psychiatrist and used a mindfulness tip from my best friend. Treatment is not one size fits all. Paxil worked wonders for me, but others have better results with other medication, or no medication at all. I’ve never been through residential treatment, but it’s been the key to success for many other people with OCD. I haven’t undergone deep brain stimulation, but there are indeed some patients who are now managing their OCD symptoms when nothing else worked.
Do what’s right for you. This is your life, your journey with OCD. Measure your results against yourself, not anyone else.