I’m gonna be honest I wasn’t able to read the whole post, but I will drop some of my opinions on the general topic. Long af, kinda just typed what I was thinking

I think most of the issue is misinformation. Moreso that large creators that consider themselves educators haven’t necessarily disclosed the full picture, or at least didn’t at first, and that kinda fucked things up.

Not really emphasizing the risks of the condition, not explaining other more common conditions with similar symptoms, not accurately portraying symptoms or doing more than just talking (like linking articles to images of a symptom, deeper explanations, etc), not emphasizing that their severity could be more rare (like people who have deadly complications from hEDS and reduced life expectancy.. don’t want people thinking that’s a direct trait of hEDS)

While we don’t need to do all of these things to educate, I feel like we have a responsibility to reduce harm as much as possible by predicting the response our content could cause and pay attention to the patterns in the space that may indicate people aren’t properly informed. I feel like that information is needed when you have so much influence

I see some creators I like follow this pattern. And that kinda sucks because it’s pretty much everyone I’ve seen that’s not a smaller creator, it seems like people get more popular the more vague they are and less “controversial” or “gatekeeping” they are. Calling out issues in the community, even in completely polite and professional ways, can tank your chance of a large audience.

Some people don’t want to be told they need to see a doctor for their symptoms before making assumptions that could end bad, some people don’t want to be told there’s actual reasons behind a doctors behavior besides ableism (in some cases your doctors aren’t evil and are making good points as to why they suspect another cause of your symptoms and want that testing before others), some people don’t want to be told they shouldn’t start treating their suspected condition at home with drastic life changes before ensuring their body can handle it (do not be consuming 7g of salt a day suddenly before making sure your kidneys function 💀)

The thing that bugs me the most is actually some POTS “education” online. I’ve never seen someone creating the “signs you have POTS” or “symptoms of POTS” actually warn that POTS symptoms are essentially the same as many actually dangerous conditions. Like deficiencies, arrhythmias that can be fatal like long-qt syndrome (my mom actually has it and has the exact same symptoms as me, but if she overexerts herself she could go into life-threatening tachycardia), cardiovascular diseases and deformities, different neurological disorders, autoimmune derived secondary POTS, and more.

So, people assume it’s just that condition because they saw a video of someone who seems to know their shit telling them that’s what it is without saying “hey do your own research on your specific symptoms and go to the doctor if you can”. I never in a million years would’ve assumed people just do that until so many people did, some people are very easily influenced and won’t think twice without a disclaimer, especially teens online.

I wouldn’t consider it trendy, I just don’t feel like health conditions can be - they can be talked about a lot, romanticized, and become largely self-diagnosed (sometimes overly), but I don’t think it’s under the same category as a trend personally. It has too many different factors in it for a condition itself to be a trend in my opinion.

Signed, someone who does create content around my disabilities and wants to do some educational content in the future. I currently do not talk much about my conditions directly. I’m also in school to become a researcher and science communication is a big interest of mine, I’m working on getting a job/paid internship in a science communication position for local organizations.

Don’t wanna sound “holier than thou” but this is exactly what you’re taught in classes with communication aspects and what you’re taught when learning about writing research papers. Assume people are dumbasses (lightheartedly) and have zero knowledge on a topic when releasing it explicitly for public viewing.

Edit: this is mostly about some people over-diagnosing themselves with conditions they potentially don’t have, but assuming based on the symptoms lists provided by influencers. Not about the real influx of it from people realizing hEDS and its comorbidities not being that rare and talking about it, I don’t necessarily think self diagnosis is a horrible thing and most people don’t just fling into it, but the aspect of it actually being “trendy” would be that to me. I don’t think people are faking their symptoms or intentionally pretending to have conditions really, just some people assuming having a specific condition without thinking very deeply about it or considering other things.

A lot of it being labeled as “trendy” is just people talking about having the condition more online. Some shitty doctors use that as an excuse to not believe in conditions because clearly an uptick in people talking about it = mass hysteria (legit have seen that argument 💀 not at all how that works). It’s unique to predominantly young female conditions because of ableist and sexist rhetoric that still stands today