This article is part of a series in which OCD specialists talk about their personal experience of OCD and the ways in which that experience informs their practice. This story comes from Stacy Quick, a NOCD therapist based in Michigan.
Some of my earliest memories are of what I now know to be OCD. I am not sure there was ever a time in my life when it was not there. It is hard to know what was my born personality and what was my illness. Of course, as a child, you accept what is. You don’t question your mind because it’s all you know. Your inner thoughts and feelings are what drive you, what make you who you are. It shapes you into the little human you are and guides you into what kind of big human you will become.
But what happens when you are shaped by a disorder that causes your feelings and thoughts to be misled or inaccurate? What happens when you don’t know who you are apart from a peculiar illness that baffled professionals for many years and one that is still seen as fascinating and misunderstood?
A Childhood Interrupted
I think there was a part of me that always knew something was different. I thought about things more than other children and about things that others didn’t. I wanted to believe that I was “normal” if such a thing existed. But deep down, I knew that something wasn’t right. I was five or six when I had this realization. How and when exactly I knew, I couldn’t tell you. But I knew.
While other kids would be playing and laughing, enjoying the carefreeness of childhood, I was lost in endless thoughts that made me sick to my stomach. I was thinking of sneaky ways to ask my mom whether the things that ran through my mind were okay or not. I wanted her to reassure me that I was not “bad.” I wanted her to wrap me up in her arms and tell me that I was not the monster or “crazy” kid that these thoughts made me think that I was.
At the age of six, I’d already learned the intense feelings of shame and guilt. They plagued me. I knew that I couldn’t just say the things I was thinking out loud. I had to figure out a roundabout way of asking them. I couldn’t bear to say them out loud, even to my most trusted confidant, my mother. My loving mom was always there for me. She would become my rock throughout my lifelong struggle with this peculiar visitor in my life.
My OCD came in waves, and the subject matter constantly changed. It felt like as soon as I got over one thought, a new one would emerge. It was as if something didn’t want me to have any joy – every time I felt some sense of peace, new, more intrusive thoughts or fears would rear their ugly head. There was no rest at times. And then, at various times in my life, it was more distant. It was still there but not as loud, not center stage.
Changing OCD Themes
It began with tics. Then it was religious images that were shameful, quickly escalating to fears I had poisoned my loved ones inadvertently. Phrases had to be said constantly to ensure safety, and I had to confess to my mom to feel okay, but I had to do it in a way that didn’t make me sound “crazy.”
I needed my mom to know what I thought because somehow, she would make it all okay. She knew me. She knew me better than I knew myself. I doubted everything about me, everything about everything. I wanted her to tell me that what I thought was “normal” and that everyone goes through this. I wanted this so badly, even though I knew it wasn’t true.
There was the “gas theme” where I was scared to death of gasoline, and I thought that I had to clean everything or get rid of it if it had been touched by someone who had touched gasoline (my dad was a machinist and frequently had gasoline on his hands).
I would hide laundry and put clean clothes that my mom had just washed in the dirty clothes. She would get so angry, but I couldn’t explain it to her. How do you tell someone that you’re trying to save their life by hiding their laundry? But I couldn’t stop. It was just too important. If there was any chance that something bad could happen due to my inaction, then I had a responsibility to help, even if it meant hours of lost time, deep emotional suffering, and endless cycles of obsessions and compulsions. It was my responsibility.
If something bad happened, it would have been because I had not done enough. The weight of the world was always on my shoulders.
There was the “maybe” stage. This surrounded an intense fear that I could lie and how awful that would be, so I had to say “maybe” or “I think” or “probably” after every single word I said or wrote (you should see my diary from that period in my life). This, of course, was a difficult task to hide, and soon people became very annoyed by this one.
There was the “choking” stage in which I only ate mashed potatoes and gravy and ice cream for what felt like two years straight. Everyone just thought I was extremely picky, and since I did really like those foods, it wasn’t all bad!
At around 14 or 15, I went through an emotional contamination phase. It was based around the idea that if I thought of something bad or shameful, I could physically wash it away. Ultimately, that wound up with me taking everything in my bedroom apart, piece by piece, and taking each thing out back to dip in our chlorinated pool.
As I hauled out more and more stuff, my stepdad couldn’t help but notice. He thought it was odd, but both he and my mom sort of let me go on with it. Of course, they didn’t know it was OCD either and didn’t really know what to do beyond fishing stuff out of the garbage that I’d thrown away because I thought it was dirty.
Discovering That it was OCD
There were so many other stages that detailing them all would make a much longer article. Suffice it to say that the OCD that visited me did not fit neatly into a box but was rather messy and all over the place. It was chaotic. It was unpredictable. It was mean-spirited and always took. It took my joy, peace, sense of identity, and ultimately a large part of my childhood.
Not long after the period in which I was dipping things in the pool, I remember that my mom was watching TV and said, “You have to come see this! This is you! This is what’s wrong with you.” 20/20 did a segment on OCD. As I saw it, everything clicked into place.
Even though I suddenly knew what it was, I didn’t actually get to see a doctor until I was 16. When I did, I saw a succession of psychiatrists and, unfortunately, none of the medications they prescribed improved my OCD.
I was married and pregnant at 17. The pregnancy really took my OCD to another level. I dropped out of high school on three different occasions because of it. Finally, at 21, I decided I could not live like this any longer. I had lost 100 pounds because my contamination OCD severely limited what I felt I could safely eat.
So I found a therapist. While they were not experienced with ERP, they knew somebody who knew enough about it and was willing to consult with them. And that’s how my recovery got underway.
I Still Have OCD, But It Doesn’t Have Me
I am still here. It did not kill me. As much as I hate to give it any credit, I am a stronger, more conscientious, thoughtful person than I might have been without OCD. It’s hard to say. There is hope. After all of these years, I still have OCD, but it doesn’t have me. It is managed. Exposure and response prevention (ERP) therapy helped me learn the tools I needed to fight back. It’s the gold standard treatment for OCD, and it works by habituating people to the uncertain nature of their obsessions and teaching them to resist their compulsions.
It has been nearly 20 years since I initially started ERP, and I still use the skills daily. I now manage my symptoms which are so much less than they were in the beginning. I know ERP works. That’s why I became a therapist — to deliver care that can be life-changing for the people who receive it.
My own experience of OCD is integral to the way I practice. It’s enabled me to pick up on things that happen in the OCD brain. There have been many times when people struggle to explain a bizarre thought and I just finish their sentence because I have a brain that works the same way.
There’s also a lot of shame with OCD. People don’t readily tell you about their obsessions without trust. If you can say to them that you’ve been there and had these bizarre thoughts, you can earn that trust more quickly and kickstart progress in helping them manage this disorder.
My ultimate aim is to instill hope in others who have battled this illness: people who perhaps have tried every imaginable therapy, only to still struggle; those who wait years to find someone who specializes in ERP. That gold-standard care is infinitely more accessible than ever, thanks to NOCD. The road to a better life is literally at your fingertips.
Book a free 15-minute call with our team to learn more about working with a NOCD therapist like myself.