If you overlook the luggage under my eyes from chronic sleep deprivation, the wobbly walk that comes with disequilibrium, the funky way I step down from curbs to avoid falling off them, or the way I have to tilt my head to avoid seeing double, my very serious and very real illnesses are invisible to most of the world. I'd never thought much about this invisibility before reading the latest post on Prof S's blog and following it up with Michelle's post, the one that got Prof S thinking on the subject. But now that I'm contemplating the subject, it's clear to me that I've been damn lucky. Instead of getting "But you don't look sick!" comments, I receive accolades for "holding on so well," "fighting bravely," "overcoming obstacles," and setting an "inspirational example" for others. My illnesses are as invisible as fibromyalgia, chronic pain, Lupus, and migraines, among others, yet when I tell people about them, the response I receive is always positive and sympathetic. Why?

Strangers who look at me won't see the piece of brain that hangs down in my spinal column, nor will they see the majority of the symptoms this miniscule protrusion causes. Arnold Chiari Malformation is an invisible yet progressively debilitating condition. Unless I am actively seizing, people will never know that I have Epilepsy, either. On the surface, I look fine, peachy keen, hunky dory, and above all, healthy. But perceptions can often be deceptions, and I think this may be the case with most illnesses.

Society has conditioned us to look for physical signs of illness such as a cough and stuffed nose for a cold, withered and twisted hands for rheumatoid arthritis, or tics and outbursts for Tourette's Syndrome. The reality, though, is that most illnesses -- even the ones we know best -- are invisible! Can you look at someone and just know that (s)he has cancer, diabetes, or heart disease? Not likely because although we know and fear these illnesses, they are every bit as invisible as Lupus, fibromyalgia, chronic pain, ACM, and epilepsy.

I believe that the positive feedback the explanation of my illnesses draws from strangers has to do with location, location, location more than anything else. ACM and Epilepsy originate in the brain, the body's epicenter. No other organ, except maybe the heart, inspires as much fear and awe as the mass of grey matter that lives in our heads. When I have a bad day and people hear about it, I get positive responses and sympathy because my conditions are neurological. And when people hear that I've had brain surgery, their reactions are even more kind and sympathetic. But I'm sure that if I were to tell strangers that I suffer from chronic pain, their reactions would be mostly negative. Aches and pains are a normal part of life, right? We all have them and ought to learn how to cope instead of concocting a condition for them. Sound familiar? This is where ignorance comes into play.

Ignorance of an illness does not make it any less real to the people whose lives are wrapped up in it. Just because we can't see what causes the pain of fibromyalgia doesn't make it a figment of someone's imagination. Unless I went around flashing the now faded red badge of courage that extends from the midpoint of my skull to slightly below the point where my neck is connected to my shoulders, nobody would know that I have an illness, either. But because I can say that a skilled neurosurgeon alleviated some of the symptoms associated with ACM, I get slack that others don't. Pain and misery are pain and misery no matter where they originate!
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2 Responses
  1. Anonymous Says:

    Well stated!! BTW, I love your blog layout. I want three columns too but I'm afraid to play around with the blog and lose all my posts and comments!

  2. Carleen Says:

    Thank you, Prof S! I had never really thought about the whole invisible illness issue before; it has just never been a problem for me. But the more I thought about it after reading your post and Michelle's, the only thing that I could think that would set me apart is the fact that people have a tendency to be more forgiving and frightened of neurological problems. And the more I ruminated on the subject, the more clear it became that there are plenty of other invisible illnesses that are treated with sympathy. People can be so strange sometimes, don't you think?

    About changing your layout -- it's really not hard to do. Before you make any changes, though, copy and paste your layout into Notepad so that you won't lose anything. I spent hours changing the layout on my class blogs -- first one, then another, then yet another -- but I had the original copy in case I screwed up something along the way.

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