My Parents Thought I Had A Brain Tumor — Then I Got This Misunderstood Diagnosis

Allison: It all started when I was four years old. I don’t have any memory of it, but my parents recall immediately noticing something was off with the way I was acting. I went from being a happy-go-lucky kid to suddenly having a lot of obsessions, compulsions, and depressive behaviors. For instance, I would wash my hands until they bled. It was like a switch had been flipped, emotionally and behaviorally for me. These symptoms came on really fast and drastic, to the point that my parents thought I maybe had a brain tumor. 

Allison: This was in 1994, so at the time, mental health wasn’t taken as seriously as it is now. Fortunately, my parents took note of my behavioral changes from day one—considering my symptoms as a sign I was sick, rather than simply discounting my actions as that of an annoying little kid.

They brought me to see my pediatrician, noting that something was wrong, but the doctor said to wait a couple days to see if it got better. After my symptoms didn’t improve, I was sent to psychiatrists, consultations at Johns Hopkins, and was eventually diagnosed with obsessive compulsive disorder (OCD). As a preschooler, I was put on Prozac, which was a pretty brave choice, considering it hadn’t been on the market very long. 

Allison: I call OCD a grab bag of mental illness—mine also came with generalized anxiety and bouts of depression throughout my life. 

I don’t have a great memory of growing up, but from what I can recall, there was always a lot occupying my mind and I experienced many issues socially. I had very black and white thinking, when it comes to people’s actions, which made it challenging to interact with others. I also didn’t really have the ability to self-regulate in terms of what I was saying, so I would voice a lot of inappropriate things or compulsively say things I shouldn’t. 

Since then I’ve really worked on my social skills, learning what’s appropriate behavior and what’s not. I’ve also gotten a much better handle on my depression and anxiety over the years. 

There were some phases of my life when I was really adamant about ditching my medication—and I spent most of my 20s off the SSRIs. Even as recently as 2021, I experimented with going off my meds. However, these experiences solidified that, for me, medication is really necessary—it makes a big difference in my internal world. I’ve accepted that I’m perfectly happy and eager to stay on SSRIs long term. Of course, it’s not necessarily the right option for everybody, and impacts individuals very differently. For some people, it works all of the time or part of the time—but I’ve embraced that I do need it all of the time. 

I’ve learned and grown so much over the years, and I have a very full life. I’m able to maintain relationships and friendships, plus pursue my career goals. 

To this day, the thing that interferes with my life the most are my contamination fears, which is a common subtype of OCD1. This means, I’m moving through a lot of cleaning compulsions during the day, and planning my life around fear of contamination. 

This is by far the hardest thing to fight and move away from. My OCD contamination fluctuates in terms of how bad it is, and COVID obviously didn’t help. I have a lot of new compulsions, and my OCD is overall worse than it was before the pandemic—which I think is true for a lot of people.

For example, before the pandemic, I was able to take my dog places, then go home without thinking about it. Now, if my dog lies on the ground when we’re outside, I feel like I need to wash her immediately when we get home.

I’m also having a harder time coming home after visiting certain public places. For instance, right now I’m in graduate school for psychology, and for whatever reason, my brain has decided that school is the dirtiest place on the planet. So when I get there, I need to wipe down my seat and desk, then shower when I get home. I’ll also leave my school bag in the car between the days I have class, because I believe it’s contaminated, and I don’t want to bring it in my house.

Allison: I think OCD is often the butt of a lot of jokes, or people use it inappropriately as an adjective—and I’d really love for people to stop doing that, because there’s a vast misunderstanding about how debilitating this disorder can be. Pretty much every mental health disorder is a spectrum, so someone might have an OCD tendency (i.e. really liking it when your pens are aligned straight), but it doesn’t become a diagnosable problem until it’s interfering with your life in a big way. Again, that can look different for everyone—but I think using the term so flippantly makes people feel ignored or not taken seriously. 

Allison: Getting older, I’ve been able to get much more clear about who I am. I’ve layered and applied my many years of therapy, and grown significantly in so many ways. I also can’t emphasize enough how much changed in my life when I started treating myself with kindness. I’ve learned that if I’m constantly judging myself, it really exacerbates all the challenges. Showing up with self-compassion first has impacted every area of my life. 

I don’t put pressure on myself to fight my OCD every day, because that’s exhausting. I’ve taken more of a values-based approach—and consider when my OCD doesn’t align with my values, then address it accordingly. It’s an ongoing journey, but improving the relationship with myself has made life a lot easier and brighter.