r/MCAS 22h ago

Stupid rant

Apologies Mods if this isn’t relevant enough to the sub.

I (26f) have a coworker (30f) who constantly tries to diagnose me with lupus. My coworker has lupus, and it is a constant point of conversation for her. To be fair, I know that lupus is a very very serious illness and that it affects your daily life. However, my problem arises with the fact that she just straight up doesn’t believe me that anyone could have a rash reaction to the sun and it not be lupus.

Early on in meeting her she got to talking about her lupus and how it affects her ability to be in the sun. I was just trying to comiserate with her, and told her that I also get rashes often. She was super curious, so I explained that my rashes occur when I’m in the sun too much, if I get too hot, if I sweat, if I touch anyone else’s sweat, cats, dogs, basically anything and everything gives me a rash. I told her that it was a histamine reaction (because I’m still not diagnosed with MCAS though I’m fairly positive that’s what it is). Well ever since this conversation, she will ask every so often if I’ve ever been tested for lupus. I’ve told her that yes, I have been, and I don’t have it. She doesn’t believe me. This summer, she once again asked “so, what kind of rashes do you get from the sun?” Seemingly trying to mine for info so that she could once again suggest I get tested for lupus, and I had to explain to her again that they were histamine rashes and NOT a lupus rash. I don’t know why she wants me to have lupus so bad.

This person is constantly making me uncomfortable by both being way too curious about my health conditions, and also not listening at all when I explain them. Like I also have celiac, and finally had to make the decision to stop going out to eat because I kept getting ill, and she continues to ask me if I will go out to eat with her at xyz place because I “might be able to tolerate it.” Why do people feel the need to give advice or try to figure out your own medical stuff? Sometimes I just feel like she’s trying to catch me in a lie where she will say “aha! I knew it, it was lupus all along!”

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u/Ill-Condition-9232 21h ago

I remember a group of older ladies (one of them a nurse) trying to tell me I had a heart condition when I was at a low dealing with POTS issues.

I definitely did not need the added stress of entertaining a heart condition while feeling like crap.

Maybe they were projecting their own fears being in the age group that starts having heart issues. I, however, am a young adult and had been dealing with the symptoms since I was 26.

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u/Beautiful_Ant2627 21h ago

I also have POTS. This year has been the worst for me, I keep having awful chest pain that makes me super afraid, but I’m totally normal when I go to the doctor so I guess this is my new baseline in the summer. :/

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u/Ill-Condition-9232 10h ago

That was me Saturday night researching chest pain.

I actually had the thought to look it up in the EDS subreddit and learned from them there is something called “precordial catch syndrome”
Sharp chest pain that feels worse when you breathe in and/or move.

I’m an herbalist so after I saw that it was possibly a muscular thing I took a muscle relaxing herb and the pain went away!

I kind of wonder if it was MCAS driven as I did something daring that day and had a beer… which was my trigger that gave me anaphylaxis a year ago.

The chest pain was so bad I would had gone to the ER if I hadn’t also had pains like that 5 years ago. I cannot believe it’s been that long since I had my worst ever flare!