18 Years of Being Misdiagnosed

I spent 18 years being misdiagnosed. 18 years of battling debilitating fear and anxiety with zero answers and no light at the end of a very dark tunnel. I knew from a very young age that I had an intense fear of vomiting, but every psychologist I saw had the same response: “Well, nobody likes to vomit.” I felt invalidated. I felt insane. I felt alone. My fear is much deeper than a dislike. I dislike stubbing my toe, but I am absolutely terrified of vomiting.

I’ve been in therapy since I was 12. Seeking, sometimes begging for answers. Between CBT, talk therapy, EMDR, and DBT, I wasn’t getting better. I was, instead, getting worse. Every day filled with sheer terror. Countless panic attacks, ruthless rituals, and severe avoidance. In 2021, at 30 years of age, I was diagnosed with OCD, panic disorder, and emetophobia. For the first time ever, I’m finally one step closer to a better life.

When you have OCD nothing ever feels safe. Intrusive thoughts enter your mind without an invitation. Your existence is occupied with rituals that “prevent” horrible things from happening.

I’m constantly thinking things like, “If I don’t text my friend back, will she die from a heart attack?” and “I listened to that song the last time I was sick, so since I heard it today on the radio, does that mean I’ll get sick tonight?” The obsessions are hard enough but adding in compulsions is a recipe for a very long and stressful day.

Check the locks.
Check them again.
Pull the handle.
Go to your car.
Go back inside.
Check the locks again.
Repeat.
Repeat.
Repeat.

Since I have a severe phobia of vomiting, a majority of my obsessions and rituals are related to contamination fears. I seldom eat full meals, I avoid certain foods, I’m constantly washing my hands until they crack and bleed, I check expiration dates over and over and over until it feels semi OK. The counting, the checking, the smelling, the inspecting, the repeating devours every minute of every day.

Getting diagnosed with OCD was overwhelming. I felt angry. I was confused. OCD is often used as an adjective to describe tidiness, organization, and apparently a deep love for Christmas or cats. I didn’t want to have to de-stigmatize my diagnosis to family, friends, and strangers while simultaneously seeking proper treatment to make it better. I felt like no one would believe me. I was expecting a lot of, “What do you mean? Your desk at work is a mess!” or “Shouldn’t you have color-coded your books if you have OCD?” The truth is, OCD is a beast that rears its ugly head in many ways. I’ve seen it with my own eyes.

With a proper diagnosis, and time to really accept the fact that I was battling OCD, I decided to start Exposure and Response Prevention (ERP) and for the first time in a long time, I was kind of eager for treatment. The positives about ERP: I’m constantly in the driver’s seat. The negatives about ERP: I’m constantly in the driver’s seat. This type of therapy involves taking the risks you do everything in your power not to take. It requires you to stop ritualizing and actually sit in and with your anxiety. It’s a “wait and see what happens” type of attitude. No one can make me do exposures and no one can make me stop my compulsions. I’m in full control of my success and that is both absolutely terrifying and extremely liberating.

This treatment has been the hardest thing I’ve ever done in my life. Most days, I firmly believe that having OCD would be easier than forcing myself to do things that send me into an absolute panic. Some days, I want to give up. Every single second of every single day requires me to catch obsessions and stop compulsions. It’s a full-time job but, I am grateful. I spent 18 years suffering while being misdiagnosed and mistreated. Today, I feel hopeful. I feel heard. I feel validated. I feel ready to begin living my life and not just worrying about it. 

Proper treatment is important. Getting diagnosed and participating in a program designed to help you is important. Your well-being is important. I’ll always be facing OCD, emetophobia, and panic attacks but I’m learning how to manage, challenge, and deal with them. I’m sorting out how to live alongside the anxiety instead of letting it rule my life.

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You are capable of living with OCD. Healing is still possible. We encourage you to use TWLOHA’s FIND HELP Tool to locate professional help and to read more stories like this one here. If you reside outside of the US, please browse our growing International Resources database. You can also text TWLOHA to 741741 to be connected for free, 24/7 to a trained Crisis Text Line counselor. If it’s encouragement or a listening ear that you need, email our team at [email protected].