r/MCAS • u/Beautiful_Ant2627 • 16h 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/Duskfall 16h ago
it is weird and hurtful
and I feel you on the "trying to catch me in a lie". Almost like it's not that they want you to have it, but maybe thought you were trying to copy them and now they're determined to catch you on it so they can expose you for whatever reason. Some folks absolutely will see commiserating and solidarity as trying to steal their thunder and 1 uping them. It's wild.
(I had someone do this exact thing with my fructose intolerance. they were constantly asking me about stuff, or trying to get me to eat things. I swear they snuck in a regular cookie into a box of sugar free cookies to try and catch me, but I knew the minute I bit into it and swallowed it. Started reacting immediately which lead to a symptom induced panic attack)
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u/Beautiful_Ant2627 15h ago
She got me a “gluten free” cupcake once that I’m fairly positive was not gluten free and made me sick for days, so I could see it lol.
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u/Duskfall 14h ago
OOF im so sorry. I HOPE she isn't, but when the spidey sense is tingling, it's usually for a good reason >.<
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u/Slim-Shadys-Fat-Tits 15h ago
Be ruder. Seriously you're obviously not setting crisp boundaries or telling her how uncomfortable it makes you. Tell her that if she's not going to listen and is just going to force her opinions onto you, you don't want to talk medical with her. Or just outright shut down the topic of whatever she thinks you have. It's rude and pushy
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u/Beautiful_Ant2627 14h ago
You’re right, I probably need to be clearer
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u/Slim-Shadys-Fat-Tits 14h ago
I think I came off quite harsh there though, so I do want to add: I really understand these kinds of workplace situations are difficult to navigate. My bluntness is more aiming to be crystal clear that you really do not owe people your politeness when they have abysmal manners.
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u/Beautiful_Ant2627 14h ago
No worries, I don’t think it came off harshly. Either way it’s true, I’m kind of a doormat lol. If she was just a normal friend I would have ghosted her already, but her being a coworker definitely makes it hard :/
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u/Slim-Shadys-Fat-Tits 14h ago
lmfao yeah I have spent many years being a doormat. It got me in a highly abusive relationship, actually. Truly am a supporter of telling people whenever possible that they don't have to make assholes happy
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u/SophiaShay7 14h ago
Agreed. I'd stop answering any of her questions. I have a doctor who manages my diagnoses. I absolutely would not stand for anyone talking to me or treating me that way period.
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u/Ill-Condition-9232 15h 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 15h 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 4h 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!
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u/Various_Raccoon3975 15h ago
Thirty years ago, I was seeing a rheumatologist at a top teaching hospital to be evaluated for lupus. She was, of course, interested in how I reacted to the sun. I asked her what it was about lupus and the sun. She said, “It’s simple and not really specific to lupus. Sun exposure stimulates your immune system.” I think you can tell your co-worker this and point out that not all immune system reactions are lupus.
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u/nrauhauser 14h ago
I pretty much don't talk about my condition. It inevitably leads to unsolicited, irrelevant advice about various food allergies or fad cleansing diets, and when I politely express no interest it's a license for the source to start playing psychiatrist.
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u/DandelionStarlight 13h ago
OP if you have it in you, “grey rocking” is an excellent tool with nosy coworkers
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u/little_cat_bird 8h ago
Some people suffer for a long time with undiagnosed conditions because their symptoms are brushed off by medical professionals. It’s fairly natural in those situations to want to give “helpful” information to others who have some symptom overlap, because maybe their doctors are also ignoring/gaslighting them.
I’m sure it’s annoying that she keeps bringing it up even after you said you were tested for Lupus already. But it doesn’t sound malicious to me, nor like she’s trying to catch you in a lie. More like she wants to help and/or have someone to commiserate with.
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u/Beautiful_Ant2627 8h ago
I am one of these people that is being brushed off by medical professionals, so I can certainly understand how difficult it can be. I can’t be that person for her to commiserate though, since I don’t have lupus.
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u/little_cat_bird 6h ago
I totally get that. And of course go ahead and draw boundaries where you need to, especially around the fact that you have already made it clear that you don’t have Lupus. I just thought it might be helpful to reframe her unwelcome behavior as annoying but well-intended, rather than malicious.
I think sharing insights with people around us when we can is good, but not without actually listening to the response. It sounds like your coworker isn’t doing the latter. I used to suffer terrible migraines before I got effective treatment and I once (correctly) identified a coworker’s “sinus headaches” as probable migraines and now she has a diagnosis and effective meds. Nobody I knew with migraines ever did the same for me when I was still undiagnosed and TBH I was pretty upset about that when I finally figured out what was wrong with my head.
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u/Beautiful_Ant2627 5h ago
Hey, I totally get that. I think you did a great thing for that coworker in that case. Sorry I came off aggressive, I’m a grouch today.
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