My long journey to accepting and using disability accommodations
As my BBS symptoms progressed, I struggled to accept my vision loss
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Before I knew or understood anything about Bardet-Biedl syndrome (BBS), I was just a little girl living life.
I was born with 12 fingers and 12 toes, enlarged kidneys, and high blood pressure. As a toddler, I began expressing that I couldn’t see in the dark and showing some early signs of obsessive-compulsive disorder (OCD). The reason for my symptoms remained a mystery until I was diagnosed with BBS at age 5.
Back then, I was too young to understand what the diagnosis meant. For most of my early childhood, I didn’t notice that I was different, but that changed in fourth grade. The chalkboard became harder to see, and a thin line of pencil on paper became difficult to make out. I felt some fear, but mostly I accepted it for what it was and kept going.
By seventh grade, I needed large-print books and worksheets, sat front and center, and used markers instead of pencils. Around the same time, my OCD became much more noticeable.
I tried not to draw attention to my differences, but my accommodations made that difficult. I still remember being sent to the office to have a worksheet enlarged and being questioned about why I needed it. I left in tears.
In high school, my vision loss steadily progressed. In addition to large-print books and worksheets, I now relied on bold-lined paper, 20-20-style pens, a closed-circuit television system (also known as a video magnifier), Smart Boards, an iPad, electronic textbooks, and teacher-provided notes. At the same time, my contamination OCD became severe. I often came home feeling like everything was dirty, so I’d clean my backpack and school papers, disinfect the car with Lysol, and shower.
One of the hardest parts of being a teenager with BBS was watching my friends get their permits and driver’s licenses while knowing I could not. I wished I could drive.
By the end of high school, I had learned to adapt, but I was nowhere near accepting my blindness. This became even more obvious when I started college at Oklahoma State University. My attitude was, “I’ve got this,” but inside, I was scared and overwhelmed.
I refused to use my white cane and was in denial about my deteriorating vision. I didn’t want to stand out, and after years of being teased, I feared the cane would give people another reason to judge me. Looking back, college would have been easier if I had accepted my blindness and used the tool that would have helped me, but I wasn’t ready.
As I got older, my vision worsened and my OCD became much more severe. Eventually, OCD controlled nearly every part of my day. I isolated myself, showered repeatedly, washed my hands until they were raw, and sometimes missed meals or medication because contamination fears had such a strong hold on me.
Time to make a change
By 2019, I had reached a point where I knew something needed to change, so I sought intensive treatment. I desperately needed help managing OCD, but I also had to be able to navigate independently. That meant confronting something I had avoided for years: accepting my vision loss and using my cane.
In a way, accepting my blindness became part of getting the OCD treatment I needed, but choosing to accept it was still my decision.
Once I began using my cane regularly, I realized how much freedom it gave me. I was also surprised that people didn’t judge me the way I had feared they would. More often than not, they asked if I needed help. The cane made me safer, more independent, and more confident.
Before accepting my blindness, I rarely wanted to talk about BBS. Over time, I became more willing to let people in and share my story.
Today, I openly talk about BBS and the ways it has shaped my life. Looking back over the years, I see how much has changed — not only with my vision, but in how I have learned to live with the condition. I went from wanting to hide my diagnosis to sharing it openly. Acceptance did not happen all at once, but I have learned that BBS is part of my life, not all of who I am.
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.
