Recently on Facebook someone asked, “What about your experience talking to people about your symptoms before you were diagnosed– what was that like? Did you get rejection from people? Sarcasm from people? How was your diagnosis received?” and it made me think back over the years. This is my OCD “coming out” story.
Growing up, I knew that I thought about things far more deeply than most of my friends– and that’s not a slam on their intelligence or depth. I just extrapolated one million miles further than everyone else my age, and I worried about things that no one else seemed to be worried about. This was the case for a lot of childhood and high school and even college. “You think too much!” was a common thing for friends to say to me.
After college, things spiraled out of control, and before I knew it, OCD had backed me into a corner of paranoia. I had had this “realization” that I couldn’t truly know what people were thinking; my obsessive-compulsive logic prompted me then to believe that my so-called “friends” actually probably didn’t like me … maybe even hated me … in fact, maybe they weren’t even human, but they were demons, and their whole goal of “befriending” me was to trick me into hell.
I was a mess. And whom could I turn to? I half-believed I was surrounded by demons.
I took a risk and talked to Judy, my college mentor, who insisted I see a therapist. The therapist insisted on meds, and the psychiatrist I met with finally used the words “obsessive-compulsive disorder.”
To be honest, I was a little shocked. OCD? Not me! Obsessive-compulsives were those neat-freaks who had to touch doorknobs forty times and stuff like that. I didn’t do anything like that– or so I thought– and my bedroom was a pit.
And yet, it was freeing to have a name attached to it. Naming steals back power.
I told my closest friends and family. I’m not sure, but if I had to guess, I’d say that they were relieved– relieved that whatever-it-was had a name and that I was meeting with a psychiatrist and a therapist and turning things around. My dad was not particularly happy about it, though; he comes from a background where you pull yourself up by your bootstraps, and he used to have a hard time understanding how I could be so depressed. I did, after all, have a wonderful life. I just also had OCD and that cancelled a lot of things out.
I didn’t go public with my diagnosis until a couple years later– the summer before I turned 25– and boy, did I choose to go PUBLIC. I decided to share that I had OCD while I was sharing my testimony with a group of summer campers and counselors. I had struggled with this in preparation for it. I was going to be standing up front asking the campers to be real and vulnerable with me that week– and I just knew I couldn’t do that with integrity if I wasn’t willing to share my own story with them. So I decided to go for it. I was terrified, but I practiced and practiced until I pretty much had my talk memorized, and I thought I was ready to go.
I wasn’t ready to go. I did it anyway though. I was shaking as I stood in front of the camp, reading my once-memorized talk, and when it was over, I walked from the front of the room all the way straight out the door and wept. I knew that there was no going back after I let them know. I think what I was most scared about was having others treat me differently. I thought that maybe they would baby me or talk down to me or tiptoe around me (since now I was camp’s resident crazy person). I thought they would smile placatingly and treat me as if I were going to shatter.
Instead, what happened is this: almost immediately afterward, a longtime camp friend of mine, who was also a counselor that week, asked if we could chat. We went down to the dock, and there he told me that he also struggled with OCD. In fact, he had checked the door at his parents’ house so many times that he broke the handle. He had never told anyone about his struggles at that point– I was the very first person he’d admitted this to– and I know I was given that honor because I spoke up first.
It gave me courage. A tiny bit, at least.
That fall, as I recruited at Midwest high schools, I asked for opportunities to speak to the student body, and what I shared with them was about my OCD, about being real with one another, about how freedom begets freedom. And the reactions were almost always positive. Students would come up to me afterward and share with me about their struggles– me, a stranger!– because I’d shared first.
So I started sharing closer to home too. When I’d meet up with someone for coffee, I’d drop the letters OCD into our conversation. When I’d be on a roadtrip with someone, I’d say the words.
And people started to share back– about their struggles, their problems, and sometimes their own battles with mental illness.
The more I shared, the more others shared. It was like I was finally living in my true self, and it was drawing that out of others. It became almost a game to me– I couldn’t wait to tell people that I had OCD! Who knows what they might need to get off their chest, and I would be opening up a path for them to do so.
It is easier to say, “Me too,” and that’s an advantage I want to give to others. That’s why I blog about OCD and HOCD and questions I have about God. That’s why I share about my own self-doubt and the rollercoaster of my life.
Because I want to give people every opportunity to say, “Me too.”
I feel blessed. I and my OCD have been well-received by most people. The hardest issue I have to face is the ignorance so many people have about OCD. But I can gently (or forcefully– ha!) educate them that OCD is more than being clean and organized, that OCD is an illness like any other.
I’m incredibly grateful for my marvelous support system. I’m indebted to God for my life and my rescue(s). I count it a privilege to share what once were my secrets, and if that sharing allows even one person to say, “Me too,” then I am blessed.
Love this post, Jackie! How brave you were to share your story like that in front of so many people. In the early days of sharing my diagnosis (the last couple of years) I often cried “during the telling” or shortly afterward. It was just so painful to talk about and I also feared being looked at differently too. I’m pretty much at the point now where I can almost talk about it nonchalantly with very little emotion and believe me that is a blessing. I too have found that very often, when I share, the other person will open up to me about their struggles. I’m amazed at how this has literally transformed the majority of my relationships to become much deeper and more authentic. My psychologist really pushed me to be open about my illness and it was one of the best things I learned from her. I’m so glad it has been that way for you too! Hugs.
Hi Sunny! Yes, I *still* cry when I get talking about those dark years! At the university where I work, I was asked to be the guest speaker for an abnormal psychology class. I spoke for an hour and STILL got teary when talking about it. God has brought me so far, and I’m so, so, so grateful!
Awesome post, Jackie! I’ve had the same experience in regards to sharing about my son’s OCD. So many people (friends and almost strangers) open up to me about their own and/or their children’s struggles once I share our story. The other thing I find interesting is that OCD has been such a misunderstood disorder that it often comes as a surprise to sufferers and/or their families when they are diagnosed with it…….like yours, my son’s room was a mess. I thought, “How could he have OCD??”
So glad you “came out.” Look at all the people you’re helping!
Now, all these years later, it’s almost FUNNY to me how I thought I was going to be shunned. It’s now such a normal and natural part of my own story that I don’t ever worry that it will be ill-received. It’s been a very positive experience for me, over all!
I love this SOOOOO much. Thank you for posting!
Thanks Kim! It’s my pleasure to share!
Pingback: Coming Out of the OCD Closet | I Just Want To Be Myself
I’ve just started to read your blog and I’m so glad you write about OCD. Our son has one of the worst cases that I could ever imagine, but still we trust God for help and for a future that can be positive and not a future with the constant torture he faces with intrusive thoughts. If you have a ‘read this book first’ regarding OCD, please tell me. Thanks.
I’m so sorry to hear your son is suffering. I spent nearly twenty years in that dark place. Exposure and response prevention is the BEST treatment for OCD. I have lots of resources available at http://www.jackieleasommers.com/OCD. You could also try reading “Stop Obsessing” by Edna Foa (who developed the ERP methods).
There is hope. I also was tortured by my intrusive thoughts, and yet, I have lived in freedom for the last four years. God used ERP to set me free. I’m here at answer any questions you might have. I hope my OCD resources page will be helpful to you.
I wrote a novel about going through ERP. It’s a fictionalized version of my own story, and you can read it at http://www.jackieleasommers.com/writer.
Hope that helps!
Also Janet at http://www.ocdtalk.wordpress.com had her son Dan at a residential treatment program. You could ask for more details there. Like me, her son also greatly benefited from ERP.