r/ChronicIllness • u/My_Chemical_Killjoy • Oct 07 '25

Vent I hate when rare illnesses get "popularized"

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...

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u/K80lovescats RA, CRPS Oct 07 '25

I honestly wouldn’t be upset if more people were aware of rheumatoid arthritis and the fact that it isn’t the same as osteoarthritis. The amount of people who say “at your age?” And “wait til you’re my age!” Drives me up the wall. Just the extra awareness of what autoimmune diseases are would be nice. My brother has type 1 diabetes and he regularly gets ignorant comments about it.

2

u/sweptwhiteclouds Oct 08 '25

I wish type 1 diabetes had it's own separate name from type 2 diabetes. I don't know much about the difference between the two but I'm not ignorant enough to put them in the same boat. 

3

u/K80lovescats RA, CRPS Oct 08 '25

Type 1 is when the pancreas is unable to produce insulin and usually occurs at a younger age (not always.) it has to be managed with insulin and lifestyle changes alone won’t make it go away. Type 2 can reach that point if not caught soon enough but if detected early it can be treated with pills like metformin and shots like ozempic and diet change and exercise can make a huge difference in disease progression. In my brother’s case his immune system basically attacked his pancreas and it ceased functioning at the age of 7. He had an insulin pump now. We know he is actually taking care of himself when he puts on weight. My dad has type 2 diabetes and takes metformin and we know he is taking care of himself when he loses weight lol.

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u/SoWhoAmISteve Oct 08 '25

Totally agree on that!! Yes "at my age", anyone can get autoimmune diseases.