Rebellious_Story

Patient Leader

When I was born, my mom was handed a small bundle of soft skin and toothless smiles. She was told I was healthy, and having no reason to mistrust doctors, she was confident that her daughter was perfect. But as I grew symptoms began to present themselves that didn’t quite make sense. Every doctor’s visit was a source of anxiety, my mom knowing she would be dismissed for worrying about my migraines or pain or weakness often avoided taking me even when she felt I needed help. It went like this until my teen years, when the dam finally broke and all of the little symptoms that had been warning us like sprinkling before a hurricane suddenly flooded our lives. I was diagnosed with Ehlers Danlos Syndrome, along with a host of it’s co-conditions. Eventually, I developed severe mast cell disease, a condition that involves uncontrollable life-threatening allergic reactions. I stopped being able to walk. I became dependent on a feeding tube. I was told there was little else to be done for me. As time has gone by, I have come to realize that healthcare is not built for sick people. I have had to crawl my way to every diagnosis, treatment, doctor’s appointment, and hospital stay. I have been treated like a hysterical female or an animal not deserving of compassion. Worst of all, I have sat back and watched friends I love suffer at the hands of a system that simply does not care about them. This lit a fire in my soul that has burned hot since the first post I put on Instagram. I am predominantly bed-bound. The combination of severe allergies and spinal cord injuries has left me unable to sit up for more than a few minutes at a time before suffering the consequences of my activity for days. I knew being confined to just four walls, isolated from the world for my own safety, that I would be required to get creative in how I helped people like me. So I did what I do best; I researched and I wrote posts and I slowly built a brand from the ground up, with Instagram becoming the soap box from which I could transcribe my story. I have been a writer my whole life. As a child, I could spend hours writing “books” and often spent my days working endlessly on various poems, thoughts, and journals. I was adamant that writing was the best way to communicate your point. I hold onto a firm belief that with the right phrasing almost any story can be interesting, any voice amplified. So I took this passion of mine and molded it into something worth reading. From my bed, I learned and researched about every kind of health condition under the sun, focusing mainly on those too rare to garner a spotlight or too complex to be easily broken down for the masses. I took this knowledge and built a platform of education, taking the time to create digestible but interesting content that could draw the eyes of society to all of us who have been forgotten in our isolation.. When people find out how sick I am, they often ask me what I do for a living. Truthfully, I don’t have an official title. Instagram doesn’t exactly pay the bills, especially if you are in a niche field. My health is too inconsistent to work for most companies, even at home, since I can have days where I am too sick to write, followed my days where I am very productive, but all of that is just conjecture. Who said jobs had to make money? When was it decided that someone’s effort isn’t valuable without a pay check? When people ask me what I do for a living, I answer without hesitation; I am an advocate. With this one label, I hope to convey the amount of hard work, blood, sweat, and tears that goes into fighting for those who may not have the talent or energy to fight for themselves. I don’t focus only on my conditions, but rather, I shine the light on any disability that has been left to slink into the shadows. I could use my writing talent to tell my story. I could tote myself as some sort of inspirational role model. I could be out for my own fame, but really, none of this fulfills me. If my name never makes it into a history book or onto a news website, I won’t be bothered. As a rough estimate, I probably spend at least 20 hours a week working on my platform. This manifests itself in late night writing sessions, quick photo shoots when my pain is bearable, constantly researching the new algorithms, and most importantly, reading and learning about other people’s stories. I don’t do this for my own benefit, and that is a sentiment I hold close to my heart. If I never gain anything from all of this effort, I am fine with that. The only thing I want from my advocacy is a better, safer, kinder healthcare system for people like me.

Location

New Bern, NC

Nominations

Advocating for Another Best in Show: Community Best in Show: Instagram Best Kept Secret
Rebellious_Story

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