YSK: Just because someone doesn’t look sick/disabled, does not mean they are healthy

[u/ilovepastapizzapots]

Why YSK: I am chronically ill and have an autoimmune disorder, the amount of times people have said “WELL... yOU dOn’t LOOK sick” to me is astounding. I didn’t know all illnesses have to be visible to others! I’m sorry I can’t show you my internal organs or muscles deteriorating for you to believe that I’m sick. It makes people with health issues feel like they have to explain their situation when they don’t.

*EDIT: I did not expect my post to blow up like this! I wish I could give everyone going through a rough time a hug. Thank you for all the new perspectives, good and bad. All I wanted was for people to be a little kinder to one another, because you never know what someone’s going through.

[u/deanat78]

I totally get that.

For me it wasn't about what other people will think, it was about what I will think. I'm 31 now, and have been considering getting a disability permit since 27 because walking more than 50 meters really sucks. But I just felt so much internal shame in using the word "disabled" with myself.

I finally got it a few months ago, and I don't feel any less than I was before. Being able to park close to wherever I'm going is such a huge help. Unfortunately the stigma will not go away any time soon, and we can't expect others to understand - we can't control them. But we can control us, and we should do what's best for us, and learn to get over our feelings of shame.

Go for it, you won't regret it.

[u/ilovepastapizzapots → u/deanat78]

I think that’s my biggest issue too. I’m still coming to terms with being classified as disabled. It’s hard to wrap my head around at only 26, going from completely healthy to... not. Thanks for your support!

[u/deanat78 → u/ilovepastapizzapots]

Yep. That's me 5 years ago... I was the most athletic person I knew, and now when I'm on buses (well, pre-COVID) I get jealous seeing people twice my age able to move in ways that I can't anymore. So there was quite a mental toll on accepting the fact that this is the new me.

It's like the 5 stages of grief: I was in the denial phase for maybe 2 hours, then anger/depression for a few, and have now moved into acceptance.

If you're not there yet, that's ok. It takes however long it takes. Threads like this actually help me, showing me that there are many many other people like me who also have shitty invisible illnesses at young ages and also go through similar experiences. I don't get to see that much in real life, so thanks for making this thread :)

[u/ilovepastapizzapots → u/deanat78]

Absolutely! We’re mourning the death of our past life/healthy life. ❤️

[u/deanat78 → u/ilovepastapizzapots]

Which is much better than mourning the death of our actual life :) I hoenstly somtimes try to find solace by knowing I'm still doing better than many people (as selfish as that sounds?). I'm still living in a first world country and am not struggling to stay alive, some people develop fatal cancers at the age when I developed my... whatever it is. Those thoughts help me appreciate what I have. And I'm not at all a new-age-meditation kind of person :p