Have I mentioned how lucky I am to know so many wonderful people in the OCD community? It wasn’t that long ago that I’d never even met one other person with OCD—let alone someone who had an experience so similar to mine.
Fate stepped in when the International OCD Foundation asked both me and Jackie Lea Sommers to blog about our personal experiences with OCD. In Jackie’s first post she mentioned that she grew up in a small town in Minnesota—hey, me too! So I wrote a comment after her post telling her how great it was and that I’d love to connect sometime.
We met for coffee—even though Jackie doesn’t actually drink coffee—and the rest is history. Here was someone who really understood OCD, right in my own backyard. We’d both struggled with HOCD and scrupulosity, too. When the IOCDF asked us if we’d run their Minneapolis affiliate, OCD Twin Cities, we said yes with the caveat that we’re busy women—with an anxiety disorder! Of course, the IOCDF knows a thing or two about that, so we talked it all through and got the ball rolling. Jackie’s the communications specialist, a great fit for her. You’ll understand why when you read our Q&A below—she has a way with words and a passion for connecting others to the proper treatment.
Jackie, Jackie, Jackie. You’re my trusted OCD Twin Cities partner, you have a popular blog with a substantial section on OCD, and you often speak at University of Northwestern about your personal experience with the disorder. But long before you became an advocate, you suffered in silence. How many years did you struggle with obsessions and compulsions before you were diagnosed and got help?
In hindsight, I can see that my OCD kicked in at age seven. I was finally diagnosed 15 years later. But even after my diagnosis, it still took another five years before I finally underwent the exposure and response prevention (ERP) therapy that gave me back my freedom!
You left no stone unturned as you worked to get relief. You tried several medications before you found the right combination for you, and you finally went through 12 weeks of ERP. How did you keep the faith and keep on pushing through the disappointments and doubts?
Five years of failed medication and talk therapy is really disheartening. I had one therapist who made me feel worthless and ashamed; after I quit seeing her, I avoided therapy for a year or so. The same thing happened with meds. I’ve had just about every side effect in the book—vision loss, weight gain, tremors, dry mouth, excessive sweating, blocking (a form of stuttering), lactation (yes, really), and a near-fatal allergic reaction—but it was the extreme lethargy I experienced on one prescription that finally made me avoid all medication for a year. When I went back (and tried a couple more failed meds), my psychiatrist finally referred me to an OCD expert. He got me on the right medication and into ERP therapy almost immediately. It was worth it all.
I know you were scared to go through ERP, and you’ve described the process as hell on earth. Now you’re one of its strongest advocates. Tell us why.
I like to say that ERP is the second hardest thing I’ve ever had to do—but the absolute hardest was living daily life with OCD. When you look at it that way, it makes sense. I chose to do something hard for twelve weeks so that I wouldn’t have to live with the hardest for the rest of my life.
ERP is the frontline treatment for OCD; it shouldn’t have taken five years after my diagnosis for someone to recommend it to me. That’s why I tell the OCD sufferers who read my blog to run toward ERP. Twenty years of OCD bondage was broken for me in just twelve weeks of ERP therapy.
You’re on medication, too, which can carry such a stigma. I know people within the OCD community who consider it a badge of honor to get through it all without ever going on medication, or eventually weaning themselves off it. Have you ever questioned whether you should take medication for your OCD? What keeps you taking it day in and day out?
I’ve never been ashamed of my medication. There’s no reason for me to be. I have something off chemically in my body, so I’m fixing it chemically so that I have all the same advantages as everyone else. I know that the stigma exists, but it’s hard for me to understand why. Do those same people think that diabetics shouldn’t get insulin shots?
I fought for my freedom from OCD. I went through years of side effects to find the right medication. I’m proud of my persistence to get the help I needed. These things feel a little narcissistic to say, but I say them anyway because I want other people to be able to say them too!
If someone asked me to describe you in just a few words, I may have to go with “devout Christian.” Your faith plays such a tremendous role in not only your recovery from OCD but in your life as a whole. But that doesn’t mean you think prayer alone is the answer to OCD or any mental illness. Was there a time when you thought prayer alone might save you, and how did you realize you needed professional help?
Oh yes, definitely. I spent the majority of my high school and college life praying for deliverance from OCD (though I didn’t know it was OCD at the time). When I finally started to get help, it was with a Christian therapist and a Christian psychiatrist—then another Christian therapist, then another Christian psychiatrist. But what I needed was someone skilled in treating ERP—whether they were a Christian or not. When you have scrupulosity and other religious obsessions, you can get tied up in trying to “solve” your obsessions (i.e., compulsions)—instead of treating OCD. It’s a very clever distraction OCD uses to keep itself in power. But OCD is a medical problem; it needs to be treated. If I was about to have heart surgery, would I want to find a kind Christian doctor—or an expert heart surgeon? Hands-down, I’d choose the expert. And that’s what I needed to do with treating my OCD too—find someone who understood OCD, not someone who understood my faith.
One of the types of OCD you’ve really struggled with is scrupulosity, and in that case prayer can actually be a compulsion! How does someone with faith reconcile this and recognize the difference between obsessive behaviors and a healthy devotion?
My ERP therapist asked me early on, “Can you tell the difference between when you’re praying obsessively/ritualistically and when you’re engaged in honest worship or prayer?” I said yes and meant it. One happened as a compulsion, with a racing heart, intense anxiety, and a feeling that I was just trying to distract myself. The other was a conversation with someone I love intensely. The gap between the two is great, and that gulf has only widened in my mind the more I’ve been set free from OCD!
Your blog serves as both an inspiration and practical resource for your many readers with OCD. Why did you decide to start a blog and devote much of it to OCD? And, come on—how hard was it at first to put some of your obsessions out there for others to read?
To be honest, I started the blog to help build a platform for myself as a writer, and at the time I was writing about OCD (as I am again!), so it felt natural to reach out to such an audience as it might be the same people who’d be interested in the story I was writing. But over the years, it’s become more of a labor of love. The more I have interacted with the OCD community, the more I love it and hurt for it. I so greatly desire for there to be a landing page when a frustrated parent Googles “my child thinks bad thoughts” or when a person in an identity crisis searches “I am straight but think I’m gay.” I want that landing page to be my website—and for it to immediately point them to the solution of ERP therapy.
As far as being scared to put my obsessions “out there,” it definitely has depended on the obsession. I spent so many years in shame; it’s hard to shed that like a coat! But, bit by bit, I’ve peeled it back—or rather, the acceptance I’ve gotten from people, the kind reactions, the “me too”s have done so. When I feel fear about putting an obsession online, I think of the people out there who think they are the only ones, and I want them to know they’re not alone, so that sort of drives me to write about experiences that maybe I’d rather not make public. I know how hard it is to speak first, but since I’ve found such freedom and confidence, I’m willing to do it, so that other people can say, “Me too.” I think of it as a gift.
After years of responding to pretty much everyone who ever reached out to you for help, you made the difficult decision to shut down the email portion of your blog. Why did you move forward with this decision, even though you initially felt guilty about it?
I am so honored by every email I receive from brave OCD sufferers willing to share their story, but after about 2,500 emails in the course of a couple years, it was beginning to be more than I could handle. I’m not a professional, not equipped to handle so much pain being handed to me over and over and over. Eventually I had to take my email address off my website and write a generic but heartfelt letter to all OCD sufferers with my best advice to them: find a skilled ERP therapist or do ERP on your own with a book to guide you. For so long, I wanted to be everyone’s cheerleader, to cheer them on to health—but it wasn’t healthy for me! It was a hard decision to step back, but I needed to be a writer and blogger and OCD survivor, and let that be enough.
Your young adult novel, Truest, will be released by Harper-Collins September 1 this year. But before Truest you wrote a novel about OCD, which you share on your blog. How did you decide to write a book about such a personal experience, even as fiction? Did you find it therapeutic?
It was very therapeutic. In fact, it helped me to understand what had really happened during ERP therapy! Though that book will never see the light of day, I’m writing another young adult novel now about a character with OCD. It’s interesting to be writing fiction about OCD again. I don’t always like it. But I love the characters and am excited that it might shed some light on OCD for teens.
If you could give someone with OCD just one piece of advice, what would it be?
ERP, ERP, ERP!