Its weird. Struggling with something people don’t realize that you struggle with and something that very very few people can ever hope to relate to.
I have to take 3 pills a day to keep my body from killing istelf.
I should have died a year ago.
For the rest of my life, my body is the biggest risk to myself.
Literally for the rest of my life I have to think about and worry and have in the back of my mind the constant worry that my body is attacking itself again. There will never be another day in my life where I can just not think about it at least once.
I have to remember to take my meds. My lung flares up when I exercise.
I have to get my blood checked at least 2x a year, and that’s while I’m doing well. If I’m doing poorly its once a month.
And it fucking sucks.
It sucks that no one realizes I have to deal with this. It sucks that I have to deal with it in the first place. It sucks that this is literally the rest of my life. It sucks that no one can ever understand what I’m going through. It sucks that my condition feels less serious than cancer because its not as aggressive in my case and I can continue living a normal life. It sucks that I haven’t received as much sympathy and it sucks that I feel this was about it because its selfish and stupid.
I always act like its not a big deal. I always try to avoid the subject. It makes me uncomfortable. I don’t know how to talk about it with people or bring it up if I want to. I feel narcissistic if I bring it up. “Oh yeah well at least you don’t have to deal with x”
“My life is hard cuz I have a rare disease”
I don’t know. Its weird. Its almost like its a controversial subject. Its not something that everyone has to figure out how to talk about. When I introduce myself to the future do I start off the bat with “hi, my names Maddy. I have an autoimmune disease.”
Once I’ve gotten to know someone how do you go about bringing it up? I like to think that it isn’t a big part of my life, that it isn’t a defining part of it, but the truth is that it kind of is. Its something I have to deal with on a daily basis, 24/7 for the rest of my life.
What do I do?


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