Navigating the double whammy of blindness and OCD
Recovery required me to learn to live with uncertainty
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Before I underwent treatment, living with Bardet-Biedl syndrome and obsessive-compulsive disorder (OCD) often felt like a double whammy. While vision loss affected how I navigated the world around me, OCD influenced how I experienced it.
Blindness often exacerbated my OCD because I couldn’t always see what was around me. But my OCD and blindness truly collided when it came to my white cane.
At first, I didn’t view my cane as simply a tool. It represented shame, judgment, and the reality of being seen as blind. I worried people would assume I had no vision at all, and I didn’t want to be known as “the blind girl.” After being teased and bullied throughout school, I was afraid that using a cane would open the door to that hurt all over again.
Instead of using my cane, I often relied on my mom’s hand or my dad’s arm, or I tried to “fake it till I made it.” In college, I just tried to make it around campus as best I could. I probably looked like a deer in headlights, but at the time, being seen with my cane felt even harder.
A tool for independence
My OCD latched onto my cane, convincing me it was contaminated and could cross-contaminate everything around me. When I folded it up, I thought about the bottom touching the ground and everything else it might have touched that I couldn’t see. That uncertainty was loud.
Treatment forced me to face both parts of that fear: the fear of contamination and the fear of accepting that I was blind. The more I practiced using my cane, the more I realized that it wasn’t a symbol of defeat — it was a tool that could give me independence.
One moment that stands out is when I walked to lunch by myself using only my cane. I realized I could do it, and people were kind and asked if I needed help. As I became more comfortable using my cane, my confidence grew. The cane I once feared became a source of freedom — and today, it’s my bestie.
Beyond my cane, blindness intensified my contamination fears because I couldn’t always clearly see what I was touching. The uncertainty around my vision made that even harder. I couldn’t control what my vision was doing, how quickly it might change, or how much more sight I might lose. OCD fed on that uncertainty and convinced me there was one thing I could control: whether I felt clean.
Feeling clean gave me a false sense of safety. As my vision changed, my OCD became louder. I feared the unknown, so I gave in to the things that made me feel more in control: compulsions, cleaning, and constant showering.
It wasn’t always a specific thought I could pinpoint. Not being able to see exactly what I had touched often left me feeling dirty, contaminated, or afraid I might contaminate something or someone else. My first instinct was to cover everything in Lysol and take a shower.
For the longest time, the shower was my safe place, but the comfort it provided never lasted long. OCD would tell me I still wasn’t clean enough, so I would shower again. At the worst point, I was showering as many as eight times a day, chasing a certainty I could never reach. It was exhausting.
The compulsions only helped in the moment. Treatment taught me that there is no such thing as perfectly clean or clean enough, because OCD will always move the finish line. That’s why I like to say that OCD is a liar.
Recovery required me to stop chasing certainty. Because blindness meant I couldn’t always know exactly what I had touched, I had to learn to live with that uncertainty. That meant touching things that felt contaminated and resisting the urge to wash my hands.
Another important part of my recovery was Healing Hooves, where I participated in equine-assisted psychotherapy. I would interact with the horses, feel the dirt and grime on my hands, and resist the urge to wash. Because I couldn’t always see exactly what was on my hands, the exposure forced me to sit with the same unknowns that blindness often triggered. Over time, I learned that the anxiety would pass without me having to perform the compulsion that OCD demanded.
Today, my life is much freer. I still live with the uncertainty that comes with blindness and OCD, but I no longer let it control how I live.
For me, living life means simply doing life: going places, making memories, experiencing the world, and moving forward even when the unknown comes along for the ride.
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.
