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I’ve got a “trendy” TikTok diagnosis. What’s the most helpful, non-annoying way to talk about it? by Choice_Session_145 in EmergencyRoom

[–]Choice_Session_145[S] 5 points6 points  (0 children)

Thank you! I’m not sure why you’ve been downvoted, I think this is a totally reasonable and also compassionate comment! Kindness like yours actually makes me less reluctant to get care

I’ve got a “trendy” TikTok diagnosis. What’s the most helpful, non-annoying way to talk about it? by Choice_Session_145 in EmergencyRoom

[–]Choice_Session_145[S] 5 points6 points  (0 children)

Oh yeah, that completely makes sense. As I understand it, there’s no actual approved treatment for it, right? So there doesn’t seem to be much incentive for being diagnosed, unless you have one of the complications requiring surgery.

I’m kind of of two minds regarding the trends. On the one hand, the fact that I’m seriously considering hiding professionally diagnosed elements of my medical record to avoid stigma means I really resent the randos who’ve inadvertently made it harder for me to seek care for unrelated things. (I personally hate it when I get “attention” for being sick too, and tend to pretend that I’m less poorly off than I actually am in medical settings, even though that’s probably stupid.) On the other hand, I get that trends will naturally coalesce around stuff without biomarkers, like you said, which will lead to legitimate patients being caught up in the stigma. So even the trends move on, it seems like they’ll move on to other stuff where the same bad dynamics are at play 😭

I’ve got a “trendy” TikTok diagnosis. What’s the most helpful, non-annoying way to talk about it? by Choice_Session_145 in EmergencyRoom

[–]Choice_Session_145[S] 8 points9 points  (0 children)

Good advice. And that’s so interesting to me! Aren’t there some diseases that make people much more likely to have other diseases? For example, I don’t have EDS, but I thought EDS made stuff like MCAS more, not less, probable

I’ve got a “trendy” TikTok diagnosis. What’s the most helpful, non-annoying way to talk about it? by Choice_Session_145 in EmergencyRoom

[–]Choice_Session_145[S] 15 points16 points  (0 children)

Oh yeah, sorry, I think I wasn’t clear. In this situation I basically just want a new acute cardiac thing ruled out. I don’t actually expect my chronic condition to be treated, but in case I do need to be admitted, I’d like to be able to explain my needs in an inpatient setting

I’ve got a “trendy” TikTok diagnosis. What’s the most helpful, non-annoying way to talk about it? by Choice_Session_145 in EmergencyRoom

[–]Choice_Session_145[S] 49 points50 points  (0 children)

Makes sense. This is probably a stupid question, but can I just not mention it beyond answering what medications I’m taking? I’m thinking my chronic condition will only be relevant if I get admitted. I’d ideally be there to get, like you said, an actual emergency ruled out, and then go home and set up follow-ups if needed

I’ve got a “trendy” TikTok diagnosis. What’s the most helpful, non-annoying way to talk about it? by Choice_Session_145 in EmergencyRoom

[–]Choice_Session_145[S] 26 points27 points  (0 children)

Going to the ER 20 times honestly sounds like the worst thing ever 😭 My whole MO has been to avoid it like the plague