discrimination invisible disease you don't look sick

But….you don’t LOOK sick…!

And thank God for that. When I’m out and about, I don’t want people staring at me with their sad eyes thinking “oh…hmn…poor girl…she looks so ill”. Anyone who knows me well knows that I hate it when people tell me their “sorry” about what I have to go through and stuff like that. Unless you’re the one who made me ill, save your stupid apologies all the time! If you accidentally trip me, or you’re flailing your arms while speaking and you accidentally smack me in the face, then by all means, PLEASE apologize to me.

On the other side of the coin, it can sometimes be a bit difficult when you don’t look “sick”. One situation in particular was when I had a perforated bowel. The emergency room doctor was looking at my test results and looking at me and was quite astonished. Usually people who have what I had have a yellowish tint to their skin, and they look REALLY bad. Compared to what I usually look like, yeah, I looked bad. But not up to the “bad” that they were expecting.

Another issue is the whole public transit thing. It’s common courtesy to allow someone who’s elderly, someone who’s blind, pregnant, disabled, etc. have your seat on the bus. Well, sometimes I’m damned tired or sick and really don’t want to give up my seat. I can’t even count the number of dirty looks I’ve gotten on the bus for not jumping out of my seat ASAP when someone elderly gets on the bus. And who’s giving me the dirty looks? All the perfectly healthy 30-something year olds who see me, someone they assume is like 18 or 19 years old and perfectly healthy.

The sad thing is, often times, these other people on the bus don’t even have the time to give me their dirty looks. 9 times out of 10, I jump out of my seat anyways in order to let someone else sit. What irritates me is seeing these other people who look down to the ground or bury their faces in their free metro newspapers once they see someone who legitimately needs that seat get on the bus.

A few weeks before I was admitted to the hospital for my stomach/bowel thing, I was on the bus with my homey Andre. We were on our way home from work. As soon as we got on the bus, mannn did my stomach start to hurt. I didn’t know it then, but it was definitely due to my perforated bowel. I was literally hunched over in pain and Andre was holding me up. If he didn’t, I’d have been on the ground. It was around 5-5:15pm on a weekday, so all of the seats on the bus were already taken. Can you believe that people saw the pain I was in…actually looked me right in the face….then looked the other way? I was in shock. What’s it gonna take? Eventually we got off the bus and Andre hailed a cab.

So I have one of those handicapped accessibility passes that go in the window of your car so you can park in those closer parking spaces. I haven’t actually had anyone physically approach me to give me hell for parking in one of those spots, but man have I been given more than my fair share of shifty eyes by people passing by when they see me exiting my car. People have actually gone out of their way to stare at the windshield of the car I was in to make sure it had one of those accessibility passes. I don’t know why they bother checking, because they still don’t feel that I belong in that space anyways. Little do these people know that I’m anemic, or I just got back from dialysis and I’m freakin’ exhausted on top of being anemic, or I’m suffering from a stomach ache (my stomach is super sensitive after being diagnosed w/ Lupus), or my joints hurt when I walk…..they don’t know this. Too bad there isn’t a miniature accessibility pass that I can tape to my forehead. Sometimes I feel like I should walk around with my right hand in the air so everyone can see my medicalert bracelet. Maybe then they’d be less judgemental of me?

As you can see, it ain’t easy having Lupus in the first place. It’s twice as difficult when everyone thinks you’re a big faker! So please, the next time you get on the bus or you’re walking through a parking lot and you see a seemingly healthy person ether sitting at the front of the bus or parking in that handicapped space, think of me! Think of those with fibromyalgia, migraines, learning disorders, Crohn’s disease, epilepsy, chemical sensitivities, mental illness, heart disease, cancer, developmental disorders, diabetes, brain injuries, chronic fatigue syndrome, rheumatoid arthritis, lyme disease, transverse myelitis…..need I go on??

6 comments on “But….you don’t LOOK sick…!

  1. Anonymous

    I believe that part of the onus on those of us who have a disability that is not “visible” is to continue efforts to increase awareness, as your post is doing. If folks have not experienced or been associated with disability, they just don’t “get it.” They probably don’t intend to be judgmental or mean-spirited, they are just not aware. You sound like a highly motivated, wonderful young person who is doing a remarkable job of coping with a difficult situation. Kudos to you, and Happy New Year!


  2. Thank you for your wonderful comments, anonymous poster!I think you are 100% right. People are not psychic, and all we can do is raise awareness!


  3. I too have lupus. Now I’m elated when people tell me I don’t look sick. WHen I was in college the words stabbed like a knife. But, I’m older and understand that if I looked how I feel, I’d rather die. I guess not looking sick keeps me alive. So thanks too the ignorant people who don’t realize that disease or discomfort isn’t always visible. Be well and I’ll visit your blog more often.


  4. Hanah Fields-Austin

    trust me i know the feeling with the whole parking and not looking “sick” deal… i hate how people who don't even need the handicap spots make sure a big deal of it… its not like they actually need the spot or something!!!! grr….


  5. Hi, fellow lupie here. Systemic mixed connective tissue with sjogrens, fibromyalgia, autoimmune thyroid, heart damage, kidney disease and something that causes high aldosterone and low potassium. In 3 1/2 years ssi battle. Because I don't look sick. Son born with it but even his wife doesn't believe it after a positive diagnosis and gout and psoriasis, joint pain, hypertension, thyroid and diabetes. God bless you!!!!!.


  6. Thanks for your message, Retta! Isn't it a strange thing? Nobody really WANTS to be sick, but thankfully for us, we don't look it. But, with that said…cut us some slack, general public! LOL

    God bless you too!


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