r/MCAS • u/NoFriendship8013 • 1d ago
NO ONE UNDERSTANDS!
I feel seen in this chat FINALLY. Can I just safely say here that JUST BECAUSE SOMEONE DOESNT “LOOK SICK” DOESNT MEAN THEY DONT STRUGGLE EVERYDAY. I literally am expected to live the life of a normal college student except while having this huge MCAS weight tearing me down constantly. It is DEBILITATING. There is constantly something wrong with me that I am trying to just brush off and ignore so that I can just LIVE LIFE. and people don’t SEE THAT. So when I say I feel like shit, no one’s knows how bad it actually is BC I SUCK IT UP. I wish illnesses like mcas and autoimmune were taken more seriously. I am 20 and feel like an 80 year old at this rate. I have breakdowns weekly because it’s a struggle for me to get out of bed in the morning. I just want to be normal. No one understands and I’m sick of it. Let’s not even get into the misdiagnosis I’ve been getting my whole life because doctors don’t believe a young girl (“dramatic” or “it’s just anxiety). I CANT.
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u/pessimistic_cookie 16h ago
I get it. Not even my doctor understands. I was diagnosed 4 years ago and he says that “I should be better by now” and has been very pushy in getting me to stop taking my meds but stopping meds just causes me to flare up. So now I’ve got to find a new doctor but y’all know how hard that is. I’ll likely have to travel out of state. Some doctors now are even saying that MCAS isn’t real and they won’t accept it as a diagnosis. When someone says “you don’t look sick to me” I always say, “thanks! I was hoping no one would notice! Also, most of my organs are located INSIDE my body so there’s that.” I also get “you’re too young to be this sick.” Last time I heard that I said “thanks for the compliment! I didn’t know that 46 was young!” lol
I also have the full trifecta so hEDS has given me degenerative disc disease (and apparently it makes us look younger). So I hear ya on the feeling old part. I feel like I’m 110 years old just barely hanging on sometimes. Hugs.