A fake smile can hide a life of loss and depression.
A confident strut can hide suicidal ideation and PTSD.
An able-appearing-body can hide a lifetime of pain and physical struggle.
When we see someone using a wheelchair, a walker, a cane, or the multitude of mobility aids that are available, there is an automatic assumption that the individual has a physical ailment. Something we can see, something tangible, like an injury (permanent or temporary), paralysis, anything that affects mobility.
We can imagine the loss of a functioning part of the body that results in disabling the entire system to where aids are required.
The reason we call certain illnesses or disabilities 'invisible' is because it is much more difficult for people to imagine the kind of debilitation that can arise from a poorly functioning internal organ. Aids for these illnesses are often in the form of pills, hidden equipment, injections, etc...
For the body to function 'normally', there are a lot of moving parts - not all of them apparent. The brain, of course, is the most crucial. So when the brain becomes damaged, begins to deteriorate, malfunction, or become compromised, everything else becomes compromised. The entire system is compromised.
If the most central system is damaged, how is the rest of the system expected to function normally?
Then, what about other internal organs?
Anyone who has experienced the malfunction of, say, the thyroid gland, the kidneys, the intestines, or the heart, knows that there is no 'easy fix'. Sure, some organs seem to be more easily dispensable (like the appendix or the gall bladder), but being dispensable does not mean that nothing changes.
Every functioning system in our body has a crucial role, whether or not we are aware of it. Any major change can be severely debilitating to the rest of the body.
The largest problem, in my opinion, with Invisible Illness is that it can be easy to fake. Unfortunately, this makes others wary of those who claim to have invisible disabilities. It creates an atmosphere of disbelief, apathy, or even aggressive claims of abusing systems, especially if one also happens to be young.
Trust me when I say that we feel it.
We feel the stares. We feel the eye-rolls. We feel the condescension, the judgement, and we feel the eyes watching us for any sign that we might be faking it.
Like when I am seated while others older than me are standing, or when I ask for help to carry groceries to my car even on days when I am not using my cane. When I walk with my cane into a store after parking in a handicap parking stall. When I move or cross my legs or stand to stretch while I am using my wheelchair. I feel you watching and wondering if I am *actually* sick.
I have long suffered with Inflammatory Bowel Disease. I was a teenager when I developed Ulcerative Colitis.
I was incontinent at age 14.
Fecally incontinent.
No, it is not easy to talk about or to admit. No, it is not easy to hide these symptoms. And yes, it was brutal trying to conceal these episodes. This symptom was my most embarrassing tormentor throughout grade school and University. Unpredictable, inescapable, and without any easy fix, or any fix at all beyond avoiding eating (which actually doesn't work - trust me, I tried). Not only that, but it is a symptom that comes and goes.
After removing my large intestine, after reversing an ileostomy bag and before developing Crohn's Disease, I had a bit of a reprieve from this symptom. I became more in control while I was awake, but sometimes suffered bouts as I slept. We tried various medications, overnight self-catheterization, and (of course) adult diapers. This symptom, though, seemed to have an entire mind of its own.
In my mid-twenties, however, it seemed to settle down, and I am lucky to say that, for the past few years, it has made few appearances.
Along with all of the excruciating pain that comes from IBD: the fatigue, cramping, bleeding, ulcerations, and the breakdown of other organs, that was one of my most debilitating symptoms until I developed Ankylosing Spondylitis and discovered my Hereditary Angioedema.
But how can you explain that when you walk out of a handicap bathroom stall (because it was the only one open when you raced there to avoid a fecal accident) as judging eyes wait to scrutinize your obvious abuse of what a handicap stall is meant to be for? How do you explain such internal malfunctions when you look entirely able-bodied? How do you let people know that, as an adult, you needed someone else in the stall to help you clean up? Or stand up? Or insert a catheter? Or change clothing?
I am not saying that there isn't any abuse of handicap-accessible features. There is. It is awful and a shame.
Invisible illnesses, however, can be just as debilitating to an entire system. Of course, I try to avoid using a handicap bathroom stall, or parking in handicap parking spots, or any of the other *very limited* options for accessibility because I know that people in that position often have no other option. Unfortunately, though, there are moments that cannot be avoided, situations that arise that cannot be easily explained or understood... and having debilitating invisible illness is absolutely brutal.
I promise you that, if I am in a wheelchair and you look able-bodied and are using the handicap washroom and I have to wait, I will hold all judgement because I do not know your situation. If you are parked in a handicap spot (with a handicap permit) and you run into a store, I will not judge your ability to run because I have no idea why you are running - and your handicap permit is enough information. If I see you using the electric wheelchair shopping cart and then notice you at a gym or out hiking or some other activity, I will not judge you.
I know what it is like to be right in the middle of what is *acceptable*. I know what it is like to nearly pass out from the pain of standing on one day and be capable of walking my dogs another day.
My body's systems are waging war and I am its sole casualty.
I look entirely normal.
My illnesses, my several debilitating illnesses, are invisible.
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