This past October was Dysautonomia Awareness Month. While this isn't new information,, October has been Dysautonomia Awareness Month since 2012, it was important for me that I participate as it was my first October being diagnosed with my disability. I wanted to do something that was informational but simple enough to broken down into short Instagram stories. Most importantly, I wanted it to show a peek into the life of someone with a disability. This idea came into fruition during my time back home for fall break. I was able to reconnect with my high school theater director who I haven't been able to see since before the pandemic. When I mentioned my struggles with getting a diagnosis, he quickly recalled how difficult was for his friend to get diagnosed with a different chronic illness several years ago. He explained what it was like for him as a friend to support her and be frustrated with her. Then he said something that really stuck me: "before I didn't know what it was like and I don't think I would unless I had had that experience. Really, you don't really understand it until you watch someone go through it." It's that experiential piece that is really at the center of awareness. It is a story.
So, I shared my story. I shared what it's like to be able to drive. I shared my journey to a getting a diagnosis. I explained the different procedures and tests I have done. I talked about my school accomodations. I discussed guilt, anxiety, shame and all the other emotions that come with being chronically ill. I shared a story of frustration and anger but I also shared a story of hope and support. And the response was overwhelming. I had my dm's filled with support and questions and concerns from close friends to people I haven't talked to in years. Most of the responses contained the same phrase: I didn't know. "I didn't know how hard it was to get accomodations." "I didn't know what it was like to get around the city without being ablle to drive." "I didn't know how hard it was to get a diagnosis." These questions really get to the core of why I am so passionate about Dysautonomia Awareness. These questions weren't rooted in pity but in empathy rooted in understanding. Thank you to everyone who approached me with love, curiosity and a deeper desire to understand.
With love,
Sabrina
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