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The majority of people who live with a health condition do not appear as if they do. Having an invisible illness means that you walk around in the mall, window shopping. Sales associates ask if you need any help finding anything, you politely say “I’m okay, thanks.” You go to work and pretend to love your job and your coworkers, like everyone else in the work world. You get pissed off in traffic and beep your horn at someone who doesn’t use their turn signal. You go out for a drink with your girlfriends and laugh hysterically. You cook dinner for your family and tuck your kids into bed at night and kiss them on the forehead. You blend in with the rest of society even though you have this “secret” you are carrying with you every single day. It’s not apparent that you live with chronic pain, nobody can see your insulin pump under your shirt. They can’t see that you have a pace maker or, like me, can’t tell that I have left sided blindness (Homonymous Hemianopsia). You typically stay at home when you are in so much pain that you can’t physically move your body without crying, when you have a migraine which is a side effect of your traumatic brain injury, when a seizure has taken all your energy that morning, or when you can’t catch your breath because you’re having a bad heart day.
Your illness is your secret, not that you don’t want anyone to know, but that without telling strangers or wearing a sign on your back that says “I have an invisible illness” nobody could ever tell. Maybe I should start a clothing line announcing it to the world, so we don’t have to hear the thoughtless comments we all tend to hear. But, if you don’t want to get on board and buy a shirt from me ($25 per tee. What do you think? *wink*), you are still in luck because there are some cheeky responses you can always borrow from me.
We tend to react to these comments by getting upset, or sometimes we just laugh and can’t believe what we just heard. Sometimes we don’t say a thing and stare in shock. Then we have a chance to process what just happened and we wish we said something. I, being fairly new to an invisible disability, have not encountered these comments often, but I know many long term invisible illness warriors that hear it frequently. The best strategy when someone is saying something insensitive to you is to have a response in your back pocket to make them think twice about saying it to someone else. So, get your pen and paper out because the following one liners are pure gold, if I do say so myself.
The most common statement... of course the “but, you don’t look sick.”
Now, don’t take this the wrong way. Many people say they could never tell I have Homonymous Hemianopsia by looking at me and I like when people say that. I like blending in with other moms at gymnastics class. I take that as a compliment. What I’m talking about is the condescending “you don’t look sick” comment where people want to make you feel like it’s easy to live with whatever illness you are forced to live with. They don’t think it’s difficult because they can’t see it. You aren’t in a wheelchair and you’re not getting around using a walking stick. No, the comment I’m referring to is the one stemmed from ignorance.
To those people we can respond by saying...
- “Well I’m assuming the worst sickness you ever have had to deal with is Influenza A at most. Well, that’s kind of how I feel on a permanent basis, only times 100.”
- “Well, I may not look sick, but I feel like I just found out Santa Claus isn’t real.”
- “Well I feel like Bob Barker just punched me out in Happy Gilmore. The price is wrong, bitch!”
- “Well, I feel like I’m Carrie Bradshaw in Sex and the City and Big just dumped me and I have diarrhea in Mexico like Charlotte.”
- “Are you hitting on me? Because I’m not that in to you.”
- “I'm sorry, but I have a significant other. I’m assuming you don’t because you seem like you’re not getting any.”
- “If you think I’m hot now, you should see me popping all my pills like a champ.”
- “Looks can be deceiving, but this ass don’t lie.”
- “If you think I’m hot now, you should see my wicked warrior scars.”
“At least you’re alive!” Is that now where the bar is? I’m alive! Woohoo!
- Yes, I am alive, but some days living with chronic illness feels worse than death.”
- “I’m alive??? Holy shit. I thought I was in hell.”
- “I’m alive?? Holy poop balls. I should probably stop trying to haunt my ex lovers.”
- Or you could just start singing like Justin Bieber “and oh, I’m alive, I’m alive, I’m alive. And oh, I can fly, I can fly, I can fly. And oh, I’m alive, I’m alive, I’m alive.” 🎼 Don’t forget to whip out those bomb dance moves.
- Or even better, the Bee Gees “Ah ha ha ha stayin’ alive, stayin’ alive. Ah ha ha ha stayin’ alive.”
Let’s hope the singing will scare them away...
“You should try to be more positive,.”
- “Thank you. That’s so inspiring. I’ve never thought of that before!”
- “Oh crap. Your ignorance is showing, you might want to pull your brain up.”
- “Didn’t your mother tell you if you don’t have anything nice to say, don’t say anything at all?”
- “Yes, because positivity can cure epilepsy/ diabetes/ fibromyalgia *insert invisible illness here.*"
And now for the mother load... dun dun dun..
So, I’ve never encountered this, but recently I’ve been told that some people have the gull to tell someone who suffers from chronic illness that they must have been a horrible person in a past life. Umm, okay. So I’m trying to wrap my head around this. When I think about hearing this my initial instinct would be to give them the big F you, but taking a more clever route I would probably respond by saying something along the lines of “It’s what you have to look forward to in your next!” Or “Just giving you a glimpse into your next life. We all know you are pretty horrible in this one!”
Whatever silly comment you may hear, please don’t let it affect the confidence you have in yourself. Your struggles and your fears and your pain is real. Please know that the people who say these things do not understand what it’s like. Look at these comments as silly, instead of letting it take a direct hit to your heart. Don’t let it get to you because it is coming from a place of ignorance. You are the only person who truly knows your own struggles. Own it, be honest about it, and tell your story to whoever will listen so that other people with invisible illnesses don’t feel so alone. When there’s more knowledge there is more understanding and when there is more understanding then there are less of these silly comments spoken. Hit them with your witty comeback, but if you have a chance to explain what it’s really like after your one liner take the opportunity to do so. It could help that one person "get it." And if they are still being "silly," then there’s always the big F you.