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Can't Talk | September 24, 2018

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The Aesthetics of Invisible Illness

The Aesthetics of Invisible Illness
Guest Post

Welcome to guest writer Beth who wrote a piece for Aesthetics Week on how appearances can be deceiving. 

I know the look all too well as I hang up my handicap parking placard in my rear view window. It follows me as I make my way into the grocery store and unplug one of the worse-for-wear motorized shopping trolleys (or as I like to call them, “grocery go-karts”). The look remains as I take a seat in the cracked pleather chair, hit the underpowered throttle, and go about my shopping excursion. It’s a look of quiet indignation and disbelief, a semi-subtle sneer and a near imperceptible shake of the head. A look that reads, “Really? So rude. So inconsiderate. So lazy.” Most of the time, nothing is said aloud and the onlookers quickly busy themselves with something else if I happen to catch them staring.

To be honest, I have a hard time blaming them. They see an overweight young lady with a shocking pink and purple undercut and inked arms, looking decently put together in jeans, a geeky shirt proclaiming my fandom of the day, sometimes a hand-knit cardigan or slouchy hat if it’s a cooler day, cute flats, and a vintage Fiocci leather bag. From the short distance they see me walk from my car to the store, or if they see me stand to reach an object on a high shelf, they see someone who seems to have little difficulty moving around. It’s hard not to jump to those conclusions.

What they don’t see, however, is the layers of tinted moisturizer with sunscreen and foundation I caked on before I left the house to cover and protect the angry red rash sprawled across my nose and cheeks. They don’t see the compression sleeves and knee braces that are hiding under my jeans to support my aching joints. They don’t see the puncture marks on my arms and legs caused by my twice weekly injection of steroids, the IV line that delivers the medication that beats my immune system into some semblance of submission, or the needle from the phlebotomist who runs constant blood work on me to check to see if my internal organs are being destroyed by my overactive immune system. They don’t see the small pharmacy’s worth of pills and inhaler stashed away inside that cute vintage bag. They don’t know that I paid more than I’d like on a pair of shoes to make sure that they are both fashionable and have the orthotic support I need to help minimize the back pain I experience on a daily basis. They don’t see that the hat covers the fact that the low dose chemotherapy drugs I take makes my hair thin and fall out. They don’t know that I keep my hair cropped short because that way I don’t have to fuss with styling or wet washing it more than once every week and a half, because holding my arms over my head for that long makes them tremble and ache. They don’t see the fact that as soon as I get home with my precious cargo of groceries, I often collapse on the nearest flat surface in total exhaustion and in a massive painstorm, too drained to cook anything with what I just purchased. They don’t see that I may spend the rest of the day (and possibly the next) couch or bed-bound, recovering from my day of errands. They don’t see that every day, my immune system is doing everything it can to destroy my body from the inside out, and that I fight back tooth and nail to try to have as normal a life as I can. This is the life of someone with an invisible illness.

When you think of the word “disability,” what’s the image that jumps immediately to your mind? A paraplegic in a motorized chair propelled by mouth controls? A blind person with dark glasses, a white cane and seeing eye dog? Or perhaps a young soldier with a prosthetic leg? It’s all right if those types of images are the first that you visualize. This is society’s model of disability. The visibly crippled, with bright red flags of disability on display at all times. There’s nothing wrong with having this, or any kind of disability. But it is not the only type of disability. Did you know that over 100 million people in the U.S. have a chronic illness? That’s nearly a third of the U.S. population. These are sometimes illnesses that often have few outward physical signs, yet the havoc they wreak on an individual is devastating and, very often, debilitating. People who have these types of illnesses often present at a glance as normal, healthy individuals, and it can be both a blessing and a curse. The discrimination faced by the disabled is staggering, even with the protections of the Americans with Disabilities Act. Because of this, being able to blend in with the rest of the population can be seen as a great thing. Sometimes though, I feel that maybe we would be taken more seriously, or receive more empathy and understanding from those around them if we had more outwardly visible symptoms.

It’s a fine line we have to walk each day, taking pains to appear not to be too sick in order to maintain our livelihoods, social lives, and pride, yet perhaps also trying to make some symptoms more noticeable so that we will be trusted when we have to use our handicap tags, or when we have to cancel plans or call out of work for the umpteenth time because we just don’t have the energy to make it through the next few hours, let alone the rest of the day.

This is a dance I’ve had many years to practice and perfect. I’ve learned that if I don’t want to get scornful looks or nasty notes tucked behind my windshield wiper when I use my parking tag, I should bring my cane with me, even if I don’t necessarily need it that day. I have learned to not hide my limp as much. I used to take great pains (literally) to hide my awkward gait and try to keep up while walking with a group of people. Now, I know that I need to take my time and move at my own pace to conserve my precious energy so that I can enjoy the rest of whatever it is we are out doing. I have learned to budget more time if I want to make myself look presentable, and I have found ways to make my ambulatory aids more chic (I adore my ergonomic purple Paisley cane from Fashionable Canes and get loads of compliments on it). I have also learned that when I want to have days where I present well, I have to plan for day(s) of gentle self care and recovery after the fact. I may not be able to do this every day, but I have learned how to figure out when it is most important to me to do so, and when to be okay with being a Frumpasaurus Rex.

They tell you never to judge a book by its cover, but sadly, outward appearances really are the first snap judgments we pass on others. Perhaps next time you see someone who is using a service for the disabled that you may think they are taking unfair advantage of, pause for a moment and ponder whether they may be one of the millions of people suffering in silence, doing the best they can to look as if they are not, in fact, disabled. Think about the fact that this may be the one day during the week that they get to feel like a semi-normal human being, respect that, and go about your own day.

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