How OCD took over my life, and what I did to get it back, part 1
What began as perfectionism and hoarding in time came to dominate my life
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First in a series.
When people think about my life with Bardet-Biedl syndrome, what might come to mind first is my vision loss, but one of the hardest challenges I have faced has been severe obsessive-compulsive disorder (OCD), which is often associated with the condition.
As a child, OCD showed up as perfectionism and hoarding. My dolls had to be in a certain order or I couldn’t sleep; bedtime stories had to be read a particular way; I would sort all of my Barney toys. I also struggled with selective mutism and didn’t talk outside the home until kindergarten, which made it even harder to express what I was feeling.
Around middle school, OCD became more present. At first, I feared chili. I know that sounds crazy, but that’s OCD — it doesn’t make sense. I couldn’t be in the cafeteria on days Frito chili pie was served, and this was truly the beginning of the storm.
Nearly every day, I would call my mom from school and go home in the middle of the school day to shower because I felt disgusted. OCD became more severe as time went on. Sometimes I couldn’t even go to school because I was too afraid to get in the car because I thought it was dirty.
By high school, I was cleaning every sheet of paper in my backpack, showering as soon as I came home, and insisting the car be disinfected because the fear of contamination was so strong.
OCD takes over
My fears of contamination grew stronger and began affecting more parts of my daily life. I washed my hands constantly, used sanitizer often, and took multiple showers a day. School became even harder when other kids noticed my compulsions and used them against me.
I attended college for a short time, but my anxiety and OCD only grew worse. I missed class frequently because I was stuck in my dorm room repeating compulsions, cleaning and decontaminating my room, my clothes, and my belongings. I took long showers and kept repeating compulsions until things felt right. Eventually, it became so severe that I left college and returned home.
At my lowest, OCD had control of my life, and I was living in a constant state of fear. My world became smaller and smaller as OCD controlled where I could go, what I could touch, and when I felt safe. I was no longer living freely; I was just trying to survive the next fear.
I spent my days isolated in my room, spraying and cleaning nonstop, showering repeatedly because I never felt clean enough, and washing my hands until they bled. I couldn’t leave my room until OCD convinced me I was “clean enough.” Eating meals and taking medication became difficult because of contamination fears. I avoided the kitchen during meal preparation and felt terrified of cross-contamination.
OCD affected not just my routines, but every aspect of my life. It dictated whether I came out of my room, when I ate, and whether I attended appointments. It even affected my relationships and my ability to simply live life freely. At that point, I felt like I was simply existing instead of truly living.
Living every day for years with severe OCD was tremendously hard because people didn’t fully understand the internal battle I was facing. It was exhausting. I didn’t want to constantly do compulsions, but at that point, OCD was in control of my life. Eventually, I realized I could not keep living this way. I knew I needed help, and I made the decision to seek treatment.
Next week, I share what happened when I finally began treatment and started the hard work of taking my life back from OCD.
Note: Rare Obesity News is strictly a news and information website about these disorders. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Obesity News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare obesity disorders.
