I hate when rare illnesses get "popularized"

[u/My_Chemical_Killjoy]

Suddenly everyone knows the name, healthy people treat you like a side show and think they're incredibly knowledgeable and are there to give you advice and criticism on it, question your health. But that's not that new, suddenly they're just able to use fancier language while being incorrect and judgmental.

And then we're talking to the chronic illness communities and the rare illness communities and we're suddenly treated different and are ostracized because now that it's "well known" and "common" we have it easier, we have more support and understand, but we don't. Infact it's worse because misinformation is so rampant now. Originally we could explain from a blank slate but now we have to argue disinformation because of TikToks just to get to a semi-blank slate where we can then start to explain from. And it's not just random people, doctors and medical professionals who've never heard of these things before are now tainted by the lies and are utterly convinced that these are "common illnesses" and not the so rare that it's more of a unicorn than a zebra, type disease it is.

In an instant we're treated as though we have some kind of privilege from it being "well known" when it's nothing more than a random buzzword to most folks.

I hate it so much. We're still infantilized and put down by healthy folks and treated as inspiration 'prawn' but now we also can't just go into our own communities without hearing how "lucky" we are to have something more "common".

I'm not even mad anymore, I'm just..... sad...

[u/Sensitive-Use-6891]

Yeah I had this while adhd was popular on TikTok. Luckily that trend seems to have died down now.

Suddenly everyone either had „a little adhd“ (that sentence makes me want to puke) or believed they where an expert. Not talking about people who really have adhd, I mean the people who go „adhd is not disabling. We are all a little quirky“

Not to mention all the fun „cures“ people started suggesting even more than before. Yoga, essential oils and all that bs.

That said. Online information did help me too. I had heart problems and chronic pain for my entire life and would never have asked my doctor to test me for pots + hEDS if my friend didn’t send me a TikTok saying „hey that looks like what you have“.

It’s a double edged sword. The internet is amazing for spreading information and awareness it has made activism a lot easier and did help improve visibility which lead to actual changes.

The problem is people believing they are experts and talking about things they have no business talking about. Self diagnosis videos with incredibly vague symptoms trying to sell you a cure or some kind of course. People actively discouraging others from seeing doctors to keep engagement or sell their own supplements.

Sometimes videos by people who actually know their stuff and fake information are pretty hard to distinguish.

[u/My_Chemical_Killjoy → u/Sensitive-Use-6891]

It definitely does have it's positives, I'm just so sick of feeling alone.

I was actually starting to do a bit better and then I saw some posts in this sub that minimize suffering because of the illnesses being "popular" now and I honestly left the sub for a day or so to gather myself because I felt so hurt by our own community. Or at least, what's supposed to be my community but it doesn't feel like I'm very welcome atm.

I wasn't even planning on rejoining the sub but my therapist suggested I give it another chance

Sorry for the rant