A few months ago during one of my trips home, I came across an old lock-box where I used to hide things as a child, but I couldn’t remember what I would’ve put in it. Tiny toys? Candy? Secret notes?
What I found there instead shocked me.
The box was filled to the brim, and on top was an unrecognizable brownish-green rectangle in a plastic bag. I pulled it out and discovered it was a seven-year-old piece of hardened bread. Beneath it were dozens of pieces of random trash.
Had I used this box as a trashcan? No, the bread was something that had to do with an OCD compulsion I had when my OCD was at its absolute worst in 2007. I’d hidden it in the box, where I knew no one would ever look, because I was embarrassed and afraid of anyone ever knowing about my rituals. The trash consisted of things that had no meaning or value that I’d felt like I needed to keep for no reason—a characteristic symptom of hoarding OCD.
Unlocking the box re-opened the darkest chapter of my life when I was consumed by Obsessive-Compulsive Disorder. As disturbing as this was, perhaps the worst part was realizing its poignant symbolism…
For six years, I kept my OCD and the suffering it caused locked up within me, despite the efforts of multiple therapists and psychologists. I thought if anyone knew about the thoughts I had, I would be labeled a crazy and terrible person. I never let anyone look inside the box, and I hid my OCD so well that even I could almost pretend it wasn’t there. But that box was in plain sight, sitting on my bedroom shelf for all those years. Had anyone had the key, it would’ve been so easy to look inside at my pain—and get me help.
I believe that the key is more awareness about different types of OCD and an open dialogue with children about mental health. If I’d known OCD could take the form of repetitive unwanted thoughts along with mental rituals to “cancel them out,” I would’ve been more inclined to open my internal OCD box sooner. If my psychologists and therapists had simply mentioned that repetitive, upsetting thoughts were characteristic of OCD—and that OCD was more than hand-washing and making everything even and tidy—that piece of moldy bread would not have still been in my box seven years later.
Ultimately, it was only when I read a description of OCD in a psychology textbook in high school, and yet another article on it in Reader’s Digest, that something stirred in me to question whether I needed to keep my unwanted thoughts and all-consuming compulsions “locked up.” What if I wasn’t a terrible person after all? What if there was a brain disorder responsible for the bad thoughts instead?
When I eventually worked up the courage to tell my parents what was happening to me, they were shocked (as was I) to learn that OCD had been completely hidden inside my mind for six years. (Sadly, it is quite common for a person with OCD to go undiagnosed for several years.) Although I had the classic sudden-onset of OCD that characterizes PANS, my OCD revolved almost exclusively around religious obsessions and invisible mental compulsions, which made it impossible to diagnose since I refused to bring them into the light.
As someone with PANDAS/PANS, I believe that OCD awareness is all-the-more important. It helps others better understand some of what people with PANS go through, and it helps more people figure out they have PANS. And obviously, OCD awareness helps those who have OCD without PANS.
Personally, it was my OCD diagnosis when I was seventeen that caused my parents to stumble upon the term “PANDAS.” For years, they had researched all manner of diseases and disorders to try to figure out what happened when I was eleven that led to an onslaught of mental and physical problems, but they had never come across PANS. But reading in OCD books and websites about this little-known autoimmune disorder that could cause every health issue I’d experienced ultimately saved my life.
Today, thanks to both medical treatments for the PANS that caused the worst of my OCD and cognitive behavioral therapy for what was left of it, I have only mild OCD symptoms. Now, I want to do what I can to help others unlock their OCD boxes and learn about PANS so they don’t have to go through six years of secret torment like I did.
Let’s face it—the result of leaving OCD in a box for so long is not-so-pretty. Like that moldy bread, the longer it goes untreated, the worse it gets…
This week is OCD Week. I hope you’ll join me in taking some time to spread awareness and possibly save someone else’s life.
P.S. Thank you to all of you who have shared last week’s post, “Why PANDAS Awareness Matters.” I have been overwhelmed (in a good way) by the responses I’ve had, and best of all, it’s been wonderful to see so many people spreading the word about PANS. Thanks again!