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Day 14 of #30DaysOfMD Meredith and Disability rights: “I was unable to say “FSHD” for years after I was diagnosed in 6th grade without tears welling up in my eyes and my face growing hot. Receiving a diagnosis with very uncertain symptoms and severity level, and with no cure or treatment, was terrifying. Although I had an incredible support system, I felt very alone. As I grew older and eventually had to give up my passion for dancing in high school, my mental health deteriorated more rapidly than my muscles. I didn’t know anyone else with FSHD besides my younger brother, and we didn’t talk about it. I struggled through my first year of college and ended it with academic suspension. My pride, stubbornness, anxiety, and depression held me back from pursuing help and accommodations. My lack of self-esteem and fear of ending up alone pushed me into a very toxic year and a half relationship which ended in my hospitalization. I can’t remember what gave me the courage to say “yes” after I moved back home with my parents, and my father asked me to write a chapter on patient advocacy in his book “Muscular Dystrophy: A Concise Guide.” I believe that it sparked something inside me and led me to my current role as the NC Chapter Director for the FSH Society. In 2017, I began working at Disability Rights NC as an Intake Specialist. DRNC is a federally mandated Protection and Advocacy agency- every state has one. I sometimes describe it as a non-profit law firm, although we do other work as well. Every day, I spoke with people of varying disabilities and listened to the individual and systemic issues they face. Every day, I learned more about the Americans with Disabilities Act and other measures that were there to protect the rights of people with disabilities, of people like myself. I fell in love with the work and with the feelings it gave me from being able to empathize with others. I am still with DRNC today, and I plan on being an attorney for disability rights one day so that I can ensure that others have access to services that I never knew about, so I can help others stand up for themselves. I have FSHD to thank for that.
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