#ButYouDontLookSick

Anyone and everyone with an invisible (or mostly invisible) chronic illness has likely heard this. It's such a common thing for us that it has its own hashtag for Christ's sake. I can't speak for anyone other than myself, so I'm going to share my own experiences with appearing healthier than I am.

I like wearing makeup, I do. Even on more casual days I enjoy doing my eyebrows and putting on some tinted moisturizer just to make myself feel a little better. Apparently a thin layer of tint on my face is all it takes for people to tell me that I look too good to feel so crappy. Don't be fooled, there's a greyish tint to the face under this makeup. Don't let the eyebrows trick you into not seeing the bags under my eyes from eternal fatigue. It's all there folks, and my makeup for the day might hide some of it from view but it doesn't actually erase any of it.

I look too healthy to need a wheelchair. I know, I've heard plenty of moans from family, I've had my fair share of nasty looks in the grocery store, and everything in between. The wheelchair either means I can't do a single thing for myself (and strangers decide to move my chair for me) or I can do more than I think and I'm limiting myself (hence the reason I'm scared to transfer myself in and out of the chair). Just because I don't look like what you think a wheelchair user should look like, just because I don't act like what you think a wheelchair user should act like, just because I'm capable of completing things without assistance, does not mean that I'm not sick.

Those braces/compression garments/kinesio tape/cane/crutches have to be for an injury and not for a lifelong disabling condition at such a young age. As someone who suffers from a hypermobility condition that causes severe joint pain and instability, I need all of the above in order to function at a very low level. People always like to ask me "what I did to my knees" but they never like the answer. "I have a genetic condition that causes widespread joint pain and instability." No you don't, they tell me. You're too young. On the other hand I get plenty of "then why are you outside?" and "why are you working" type responses as well. People don't like the idea that I'm younger than they are and still very sick. People associate old age and getting old with failing joints and canes and pain, they don't like the idea that it can happen to anyone at any time. It threatens their safety, so they'd rather deny it.

The looks I get a restaurants when I don't order food, or when I order something very small and still don't finish it. I can see the cogs in their brains working, trying to figure out why I came with someone to a restaurant only to sit there and not eat. I can see them thinking "anorexia? bulimia?" and wondering if maybe I just don't like their food, or I don't want my date to pay for too much. Not once do they think that I'm not eating or hardly eating because eating causes me excruciating pain, nausea, and I often just vomit it back up anyways. They're looking me up and down, gauging my size, trying to figure out why; but they're never right, because no one thinks "oh they're just sick" when they see a 20 year old.

There always seems to be a common theme of people not wanting to consider that we're actually ill: they don't want to admit that young people can get sick too. Once they admit that, they have to be scared of ending up like us well before they turn 80. Scared or not, it's belittling to those of us who are just trying to live and thrive with what we've been given.

There's a phrase that I've heard from a few people that I believe is the perfect way to wrap this up, "you're not scared, you're just an asshole." Fear is no excuse to treat us like crap, and being disabled is not the worst thing that could happen. My illness is not the worst thing that has happened to me, and it is not the worst thing that could happen to someone else. It's time to end the stigma surrounding who does and doesn't "look sick", because there's a billion different ways to look sick.