Rare Disease Day 2020

It’s rare disease day. A lot of people across the Internet have been talking about and educating on their rare diseases. I’ve talked at length in various places about my particular disabilities, so that’s not what I’ve chosen to write about and observe today. What I will write about is how living with rare disease affects me.

Right now, I am having more health concerns that usual. It’s not easy, and it’s stressful. I grapple with so much. On one hand, I want cures for the disabilities that plague me. I want to be able to work. I want to be able to go back to school. I want to do os much more with my life than what I currently do, but my health says nope.

I often feel like a bad disabled person, because I struggle with being disabled. I struggle with being in pain all the time. I struggle with my vision. I struggle trying to accept that there are so many things I simply can’t do. My rare diseases impact me on such a profound level that it really messes with my head at times.

I feel like I can’t make anyone happy. One group of people seems to expect me to want a cure. Another group of people seem to think I should just accept it. Another group thinks I should make it my identity. Another group… you get the picture. While my disabilities are very much a part of who I am and are intertwined with who I am, they’re not all that I am.

It’s rare disease day. I’m hoping that one rare disease day, I can write about how my life has changed since a cure. I’m hoping one rare disease day, I can write about all that I’ve accomplished. But this year, I’m writing about just how hard it is. It feels like as a disabled person, I’m supposed to meet certain standards that I just can’t. And that’s okay that I can’t.

This year, it’s hard. This year, I don’t want to have rare disease. This year, I am desperate for a cure. And that is perfectly okay.

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