When You Have an Invisible Illness and You're Judged By Your 'Cover'

The first time I realized the accuracy of the name “invisible illnesses” was in an emergency room.

If you met me that day, you would likely see a young, quiet blonde haired girl with no signs of physical injury. However, the saying “don’t judge a book by its cover” is painfully accurate. I was quiet due to the fact my tonsils had swollen to the size of oranges. This was due to a myalgic encephalomyelitis ravaged immune system that had decided to pack up and go on holiday right as the Epstein-Barr virus decided to set up shop. And when you can’t open your mouth without drooling everywhere, it’s nice to sit and just focus on breathing through the tiny hole in the fire pit of your throat.

Sitting behind me was a middle-aged woman and her husband that had arrived just after me. I may have had an almost completely blocked throat, but my ears were working just fine. Fine enough that I heard the woman turn to her husband as a nurse called my name, and mutter,
“Must be one of those hypochondriacs. She’s too young to be really sick.”

Since then I have heard enough variations of that sentiment to produce a full color spectrum. It has come from every angle more times than I can count. Hearing statements like that used to make me question if I’m sick enough. But being sick at all is sick enough. Feeling restricted in any way due to your illnesses, physical or mental, visible or invisible, traceable or not, is sick enough. I am valid, because I feel this way, and I know this isn’t “normal.” And hearing these things doesn’t make me angry. It makes me sad, and I’ll tell you why.

Woman from the emergency room, I would love it if what you said was true. It doesn’t seem likely that young people can get sick in no visible way. Yet, the most common time for people to get myalgic encephalomyelitis is between their 20s to mid-40s. It’s the same with many invisible conditions, such as fibromyalgia (ages 25-55), lupus (ages 15-40) and Crohn’s disease (20-29).

But I know why you thought that I was “too young.” It’s common for people to think that, because we are part of the group of invisible illnesses. Doctors used to call it the “yuppie flu,” because no one could see it physically, or through medical tests. The sentiment and all varieties of it is still a running theme among both the public and medical field. The problem isn’t with us, it is with the way society views (or doesn’t, in this case) invisible illness.

Times are changing with more people speaking out about mental and physical illness through movements like #MillionsMissing, or awareness months, or even just educating one person. We hold our power in sharing our stories, and educating others around us. We have been bought together, and we are stronger for it. And the more we speak up and normalize our existence, the less people will assume illness must be visible to be valid.

Woman from the emergency room, I hope meeting me changed your perception of what illness looks like. Because when you walked into the emergency department an hour later I saw you really see me. I saw you observe how I was hooked up to an IV, while my nurse took my vitals for what seemed like the hundredth time. You heard the doctor telling him to administer medication in an hour, three hours, six hours. Because you then made eye contact with me, and in that moment, I hope you understood: my illness doesn’t always have to be visible for you to see it’s real.

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Thinkstock Image By: 1Viktoria