Perhaps you’re guilty of it, I know I was before I got sick. Seeing someone pull into the handicap spot of the local grocery store only to see a person who looks perfectly healthy get out of the car all the while thinking to yourself, “Well she sure doesn’t look disabled to me”. Or maybe you learn someone you don’t know well, a neighbor down the street perhaps or someone you met through someone else at a party is on disability but the few times you met that person they seemed to be functioning just fine to you and you wonder…”Is that person cheating the system on my tax dollars? She sure doesn’t look sick!”
I used to be the master of judgement in this way. I admit it. I had absolutely no concept at all that a person’s outsides can be so deceiving. I used to think “sick” meant looking that way. You know….crippled up. A mess. Chronically ill people should need a cane or a walker or a wheelchair, damn it! They should have gnarled arthritic hands and swollen legs. They should have no hair from the ravages of chemo therapy. They should have oxygen. Chronically ill people are always depressed and unkempt and disheveled in baggy sweatpants and an old ratty t-shirt walking around Wal-mart in their slippers, right?
There is no way a chronically ill person should look like this…
outdoors, enjoying the afternoon sun with her beloved pets and being of all things….happy!
No, this cannot be true. She cannot be chronically ill…she doesn’t LOOK sick!
Guess what! She IS sick. While she might look good on the outside. Her immune system is busily attacking, well…nothing. That’s right. Her immune system is going bat shit crazy on the inside of her body for no apparent reason. It is busily forming clumps of cells in her lungs especially although other organs are surely receiving similar treatment.
These clumps of cells by themselves aren’t dangerous. Her disease, Sarcoidosis, only becomes dangerous when these clumps start to interfere with proper organ function. This problem, she has in spades. Her lungs are now scarred from these otherwise harmless cells that are supposed to be protecting her but have instead created a restriction to her breathing and she has permanent damage and shortness of breath that will be a life long struggle. A struggle accompanied by brutal bouts of fatigue, frequent fevers, muscle cramping and weakness, unintended weight loss and neuropahty to name a few.
That “She” is me by the way and you’d be surprised how often I get told that I “don’t look sick”. Sometimes it’s meant by well meaning people to be an encouraging statement but it never feels that way. By others it is said with bewildered puzzlement. How can she look that way and be sick? While annoying at least this is honest. Ignorant, but honest.
I write this post today to dispel this myth about chronic illness. I write this post today to educate the ignorant. You can be sick and look just fine and what goes on inside your body may not always show on the outside. And it is unfair and unkind to assume chronically ill people should LOOK sick and here’s why…
When you are chronically ill, your life changes. You are in a permanent state of loss. You cannot do many of the things you once took for granted in good health. You must pace yourself differently, say “no” to friends because of fatigue, perhaps lose a career you loved, endure strained relationships because people don’t understand your state of physical health or are in fear of it. When you are chronically ill you endure all of this in addition to a body that will not function the way you want and need it to. Thus, a constant feeling of loneliness surrounds you and you must work tirelessly to evade depression because of it.
So, if a chronically ill person looks good, it is simply because they are able to…because they want to…because it is the one thing they can still control. Continuing to try to look my best helps me feel more…”normal”…more “okay”. It’s hopeful. It helps me elude the evils of the disease even if only at the surface and I should not be judged, nor should any chronically ill person, for doing all that I can to sustain a sense of pride. In this way, I am no different than anyone else.
Even though it would be so easy to do, I don’t want to become that disheveled person in old baggy sweatpants. Nor should it be assumed that I should have to. I urge anyone with preconceived notions about the disabled, about the chronically ill to examine them now. And be more open to understanding that there is often more to what you see than the surface of something.