This past week, the Official Facebook Page for Invisible Illness Week (yes, there is one, this year it’s Sept. 8-14) posted an image of a note that was left on the windshield of someone handicapped. The note read:
You are NOT disabled. I saw you and your daughter park here and walk into Macy’s. My sister is in a wheelchair, and you should be ashamed! Lazy is not a disability!
Of course, the person inside the car actually was disabled, and instead of taking offense to the note, she was actually more disheartened and even a bit embarrassed. You may be surprised at this response, but as someone who has been in this position many times myself, I completely understand. Living with a disease like Rheumatoid Arthritis, or really any illness that isn’t one of the sexy, cause-du-jour, ailments that have readily apparent symptoms can be trying. People know you have a disease, but you are made to feel like you should be ashamed of yourself for “making such a big deal about it,” especially on the good days when you can actually go out in public without any outward signs of disease. The woman who wrote the note was obviously of this opinion, because I can list any number of diseases that might not show symptoms on a daily basis, and that’s without the benefit of the five minutes it takes to write a nasty note. Lazy may not be a disability, but it sure seems like stupidity is, and it’s extremely contagious.
Autoimmune diseases are often referred to as “invisible illnesses,” and I don’t have to explain why if you’ve read the paragraph above. People like me wake up every day and the first thing we all do, whether we are nine years old or ninety, is to take stock of our bodies and see what kind of day it’s going to be. If everything hurts or we have a fever, or the medication we took the night before didn’t work 100%, then it’s going to be a crappy day, to put it succinctly. During these times, you are exactly what everyone expects you to be – a sickly, unwell, individual, with a disease that is evident to anyone you meet. I guarantee you that no one will dispute your handicap-spot worth on those days.
Honestly, in some ways these are the days that it’s easier to deal with the rest of the world, and you can easily fall into the trap of playing up your illness in order to prey on the sympathy of others. Any of you who have been sick for a while knows exactly what I’m talking about, for we’ve all been there. People see you limping or wincing in pain, and suddenly you have two or three helpers surrounding you, ready to get you whatever you “need.” They are all sympathetic, and before you know it you are propped up in a recliner with a big glass of lemonade in your hand and the TV tuned to the movie channel, and there’s a meatball sub on the way (or a big block of yummy unflavored Tofu for you vegans – mmmm, soyful!). As if that wasn’t enough, the people around you even start to give your arguments and random thoughts more credence. “Yes, that would be a great idea, we should totally use orphans as National Park Rangers to save money.” It’s intoxicating, addictive, and there isn’t one of us who hasn’t thought to ourselves “boy I could get used to this.” So you start to consider what life would be like if you were “sick” every day, and your sympathetic helpers became permanent fixtures. Sure, it’s good to be the king, but it always goes bad. I’ll lay out the progression for you, just like Yoda in Star Wars. Sympathy turns to pity, pity turns to resentment, resentment turns to anger, and anger turns to hate. Before you know it, the people who are helping you hate it and begin to hate you.
So, as you can see, the above fact rules out acting sick all the time, so there are going to be good days when symptoms are at their least. This means walking around in public after parking in a handicapped spot, and dealing with nosy, rude, people like the woman who wrote the note above. There are no shortage of people who give you that stare, either. This is the stare that says, “hrmph, how horrible of you to use someone else’s handicapped placard.” We’ve all gotten this stare, and no matter how many times I’ve been on the receiving end, I still want to walk right up to the person and give them an education they won’t soon forget.
I remember one time I even got scolded by a cop for asking where the disabled parking was. He looked at me skeptically and said, “Why, what’s wrong with you?” I, having dealt with ignorance many times before, simply said I had R.A., and the policeman acquiesced. My friend in the passenger seat, however, was upset. He started telling the cop it was none of his business, and that he had no right asking me what was wrong, etc. The poor cop felt so bad after we had parked that he came up and apologized, saying, “They tell me I have to ask.” I told him not to worry about it, as I always do when people discover I actually am disabled, and went on with my day. Another time, my friends and I were hanging out in a parking lot somewhere, and a cop drove up and asked “who is handicapped here?” when he saw we were parked in the disabled spot. Even though I had my handicapped placard clearly displayed, he still wanted more proof. So, even though I was just 21, I said, “My hips are replaced, want to see the scar?” and I started to undo my belt. I was praying to God he didn’t say yes because I didn’t want to get arrested for indecent exposure instead, and luckily he took my word for it. It just goes to show anyone is susceptible to this widespread misconception.
Being invisible is part and parcel with having an autoimmune disease, it’s just a fact of our lives, and, as I said, we will always be looked at like we are somehow gaming the system. A large part of this behavior is because we are such a visual-based society. We eat with our eyes, we shop with our eyes, and we judge with our eyes. If someone doesn’t look disabled, well, then, they aren’t disabled, why would our eyes lie to us? This is also why it is so hard for people with autoimmune illnesses to obtain disability benefits, because when dealing with the government they follow the philosophy “If it walks like a duck and talks like a duck, then it’s a duck,” even if it’s a cow with milk shooting out of its udders at the time.
All I can tell you is that you should feel sorry for these closed minded people, but also realize that you, yourself, are probably guilty of judging a book by its cover every now and then. We all do it; it’s just that this time, we happen to be on the receiving end. I’m supposed to say just hold your head up proudly and ignore these people as you walk on by, but if I’m being honest, there are times when I’ve said “ah to Hell with it, it’s just easier to limp a little bit than deal with these jerks.” There’s the ideal and then there’s real life, and we have to live somewhere in-between.