Observing 27 Years with OCD

Living with any chronic illness isn’t easy, and obsessive-compulsive disorder (OCD) is no exception.

Some days, my thought patterns are easy to manage, and some days, the OCD wins — hands down. Indeed, my low points have included two major crises where I had to take significant time off work because I was so ill. But the high points include learning self-care, impermanence and resilience, and gaining an amazing community.

I’ve had OCD for 27 years. That’s more than a quarter of a century. I figure passing 25 years makes this a good a time to look back at how my mental health journey started and what I’ve gained along the way.

How It Started

I first showed signs of OCD in middle school, though neither my family nor I realized it. I went through a period where I washed my hands all. the. time. I washed them so much that they were dry, cracked, raw and bleeding. I didn’t know why I was doing this, but I couldn’t stop. I was ashamed and didn’t talk to anyone about it because I was so embarrassed.

Toward the end of high school, I developed “checking rituals.” Before going to bed every night, I had to make sure all the doors and windows were locked; otherwise, I believed, someone might break in and hurt my family. I also had to ensure that everything was plugged in properly; otherwise the house might catch fire while we were asleep. In my mind, the consequences of not checking were deadly, so I’d check the locks and plugs two, three, four, five times — as many times as it took before I could finally convince my brain we were safe. It was exhausting.

Realizing I Needed Help

It wasn’t until my junior year of college that I went from having some symptoms to full-blown OCD.

I was moving into my dorm room, which had a shared bathroom, and the shower didn’t drain. I bought some Drano, poured it down the drain and thought, “There! Problem solved.” Later, my suitemate told me that she had contacted the maintenance department, who used another drain cleaner and told us it was very important not to use anything else. I started panicking.

What if the two drain cleaners mix? I wondered. They can produce harmful gases. And the gases might be odorless. My room could be filling up with deadly odorless gas and I wouldn’t even know.

I emailed maintenance, and they emailed back, telling me not to worry, that it would be ok. But their reassurance didn’t help. While I knew, logically, that the experts were right, I was still terrified, but didn’t know what else to do. I climbed into bed that night truly believing that I wasn’t going to wake up in the morning.

I had more and more incidents over the next four months, and I became increasingly anxious and exhausted. By the end of that semester, I was so anxious I literally couldn’t sit still or focus on studying for my exams.

You need to study for your exam tomorrow? I would tell myself. That’s nice. How about you take the bus to the store to buy cleaning products you don’t need because you can’t stop obsessing about the thing that might maybe potentially one day kill you if you don’t take care of it RIGHT NOW.

Finally, with my roommate’s help, I went to the school counseling center, got my exams deferred and went home to start working on my mental health.

Learning Self-Care, Impermanence and Resilience

As a young adult, I was a bit careless with my self-care. Stay up ‘til 2 am? Sure! Hydrate with Mountain Dew? Bring it on! I learned, though, that while these behaviors felt great in the moment, it felt even better when I adjusted my habits so that my OCD wasn’t completely overwhelming; over many years, I learned to set a regular bedtime, to remember to eat, to drink water, to take on less work, to take time to rest, and so forth. OCD forced me to develop habits that, ultimately, make a positive impact on all parts of my life.

I also learned to change my relationship with OCD. While I certainly had (and have) every right to be frustrated and irritated when I’ve driven myself to exhaustion because I need to clean the whole house right now, being frustrated and irritated didn’t make me feel better any faster.

Now, I’m much better (though definitely not perfect) at adopting the following perspective: “Ok, you don’t feel well and are frustrated. This isn’t permanent. What self-care can you do while you’re riding this out? What can you let go and pick back up when you’re well again?” Understanding impermanence and practicing this kind of resilience are incredibly helpful tools, so I’m glad having OCD gave me the opportunity to learn them.

Being Part of a Community

OCD is what led me to finding my community. I can’t tell you how wonderful it was the first time I attended a NAMI program in 2011. I didn’t have to explain myself, or my emotions, or what XYZ meant; everyone else in that room had been through similar experiences.

It was in that first NAMI program, too, where I realized I’d learned a lot about mental health conditions and that I could help others. That first program was NAMI Family-to-Family, and I was able to connect as both a family member and share some perspective about having a mental health condition myself.

I’m now trained as a NAMI Family-to-Family program leader, NAMI In Our Own Voice program leader, NAMI Ending the Silence program leader and NAMI Peer-to-Peer program leader and trainer. I’ve met amazing and wonderful people volunteering with NAMI over the years, and I am truly thankful that I can give back in this way. That feeling of coming home, of knowing that NAMI people are my people, is amazing every time.

Looking Forward

I’ve often wished I didn’t have OCD, particularly when I’ve been feeling low and struggling. That said, if I had the chance to re-do the last 27 years without OCD, I wouldn’t. I’m not defined by my OCD, but it has greatly influenced my life.  

OCD isn’t fun, but I wouldn’t be who I am without it, and I turned out to be pretty awesome. Weird, but awesome. I hope that 27 years down the line, I’ve continued to use my experiences with OCD — good and bad — to help me stay healthy, enjoy life and help the community I’m so glad to be part of. 

Liz Norton is the Director of Business Analysis at NAMI.

Note: This article was originally published in the Spring 2022 Issue of the Advocate.