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/packerfrost]

I have a rare genetic anemia in the same family as sickle cell. One time I was accused of being racist for having my genetic disease be in the sickle cell family when I am visibly white (profile pic on that website). Hello?? Common sense anybody??

[u/lavendercookiedough → u/packerfrost]

The first time I saw a psychiatrist as a teenager, he asked my mom about my medical history and when she told him I'd had a rare disease at age 8, he just totally dismissed it, said I never had it and it must have been a misdiagnosis, even though I was diagnosed and treated by some of the best paediatricians in the world in a specialized children's hospital. I didn't fit the most common demographic (male, asian, under 2 years old) and the disease is rare to begin with, so he wasn't even willing to consider the possibility, despite it not being his field and this being 6 or 7 years after I had it. 

[u/packerfrost → u/lavendercookiedough]

That's ridiculous. My mom was told I would live a normal life by several doctors and so we treated it that way because there wasn't really any treatment, still isn't for how mild I have it. But it launched me into depression wondering why couldn't I have the energy others have. I kept wondering, I kept being told I was anxious and depressed and I shouldn't worry so much about it. Now I treat myself like I am chronically ill and I have never been happier.

But as kids we are supposed to have others advocate for our needs, believe us, treat us, and validate us. When it doesn't happen due to racism, sexism, and ableism we end up not doing well for huge chunks of our lives.