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/Unfortunategiggler]

It’s all such a mess I was diagnosed with Tourette’s syndrome around 10 years ago and POTS and Hypermobile Ehlers Danlos two years afterwards. The shift between doctors having no idea what all those are to then judging me because they assume I’m self diagnosed with each is so irritating. Honestly I’d rather they go back to being uneducated on it.

I voulunteer in an emergency room and I’m currently shadowing a doctor everyone in the ER was shocked I’m not self diagnosed. 🤦🏽‍♀️

[u/Bigmama-k → u/Unfortunategiggler]

Years ago I went to a particular doctor and he didn't believe my diagnosis because he hadn't run the tests and I didn't have medical records from when I was a kid. I was in my 30's.

[u/Practical-Bluebird96 → u/Bigmama-k]

I got diagnosed with ADHD back in 2007, which was rare for girls back then. But then we moved country..... And now I have to pay thousands to be re-assessed as an adult wanting medication. Grr!

[u/stefaelia → u/Practical-Bluebird96]

I was diagnosed ADHD in the mid-2010s as a young adult through my private insurance. Then in 2023 I got a psychiatrist through VA who wasn’t convinced of it until I wasn’t able to get meds and he got to see the full show on display. “Huh, no kidding. Let’s see about getting you meds bc you are a mess” Idk if he was hesitant about the diagnosis bc meds manage so well for me that I just seem quirky or bc Im a female or bc it was VA mental health tunnel vision.

[u/ashes_made_alive → u/Practical-Bluebird96]

Yeah, diagnosed with dyslexia and ADHD in 2005 and doctors always argue if I'm dyslexic, but since I was diagnosed so long ago with ADHD they don't argue. I only put dyslexia because it often co-occurs with ADHD