From hiding to helping: Finding purpose through advocacy
I'm sharing my journey with BBS, blindness, and OCD to support others
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For a long time, I never imagined that my story could help someone else. I spent years feeling embarrassed by my blindness, ashamed of my obsessive-compulsive disorder (OCD), and hesitant to talk about the challenges of living with Bardet-Biedl syndrome (BBS). Instead of allowing people to see those parts of me, I tried to hide them.
Looking back, I realize I was not only hiding my diagnoses — I was hiding myself.
That began to change during OCD treatment, which helped me start taking my life back from the disorder while also challenging me to stop running from the other parts of my story. I started accepting my disability and being more open about my vision loss, even though it made me feel exposed.
Being vulnerable was uncomfortable, but it was also freeing.
After completing treatment, I was invited back to share my story with others facing their own OCD challenges. Standing in front of people and speaking honestly about some of the hardest moments of my life was not easy. However, I quickly realized how much I loved connecting with people who understood what it was like to fight a similar battle. The experiences I had once felt ashamed of were now helping others.
This realization changed the way I saw my story. I decided that if sharing it could inspire even one person or offer a small glimmer of hope to someone in the thick of a difficult season, then putting myself out there was worth it. From there, I slowly dipped my toe into advocacy.
Sharing my story
Another opportunity came after I began taking Imcivree (setmelanotide), a medication for people with BBS. I was asked to participate in its ambassador program, and I said yes without hesitation.
I didn’t have a big plan or a long list of expectations; I simply knew the opportunity felt meaningful and gave me a sense of purpose. It gave me a chance to talk about a rare condition most people have never heard of and share my experience — not only with the diagnosis, but with what it’s like to navigate daily life with BBS.
After years of keeping my challenges to myself, I stepped out of my comfort zone, participating in conversations, recordings, and speaking events. Through the ambassadorship, I began to realize that my voice mattered more than I had allowed myself to believe.
I enjoyed my time as an ambassador, but the role focused primarily on one part of my experience. I eventually realized I wanted a place to share the different pieces of my life, which led me to create my own website. I wanted to turn my mess into my mission by spreading awareness about life with BBS, blindness, and OCD. At the same time, I wanted to show that life continues beyond a diagnosis. Disability is part of my story, but it is not all of who I am. My life is also filled with joy, relationships, adventures, faith, and purpose.
Today, I continue sharing my experiences through my website, this column, and my involvement with the BBS Foundation. Each opportunity gives me another way to connect with others, raise awareness, and remind people facing similar challenges that they are not alone. Advocacy has helped me grow more confident, but what means the most is knowing my story may help someone else feel understood.
To me, advocacy is not about having all the answers or telling a perfectly polished story. It’s about showing up honestly and sharing my story vulnerably. It means being willing to share the difficult parts of my story alongside the hopeful ones.
For years, I tried not to be seen. Now, I share my story so others can feel seen.
If my words offer hope to even one person or remind someone that there is still purpose and joy beyond a difficult diagnosis, then sharing my story will always be worth it.
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.
