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.
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.
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.
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:
- 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.
- 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.
- 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.
Alison Dotson 