She's a character, she has opinions.

Invisible Chronic Illness Awareness Week – September 13-19, 2010

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I’m writing a post a day for Invisible Illness Awareness Week. Want to know a secret? Because of my invisible illnesses and the difficulties I have functioning because of them I’m writing these posts days, even weeks in advance. (The miracle of the internet, I tell you what.)

“The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer.” [Source] Now, think about it for a minute. If you see someone using a mobility aid or wearing a scarf over their head to cover hair loss from chemo, you know they’re sick. You don’t know exactly what’s going on, but you know something is. But if you looked at me or at any of the people like me you’d think we were fine. You have to look closely to see the dark circles under our eyes or to notice the faint frown of discomfort as we silently experience pain.

Now I’m absolutely not saying there is a hierarchy of disability/illness and that one is worse or better than the other. As far as I’m concerned, the one that’s personally affecting you is the worse one. But what I am saying is that it’s difficult to exist with an invisible illness. I don’t get that automatic assumption that there’s something going on. I get the automatic assumption that I’m fine and quite often that comes with the idea that I might not be sick, I might just be slacking.

I have post-herpetic neuralgia (PHN) and chronic fatigue immune dysfunction syndrome (CFIDS). I also have migraines, anxiety, and depression. You can’t see any of those things, you have only my word that they exist. Enough people experience migraines that they tend to believe me when I talk about them. And if they don’t, they can always stick around and wait for me to vomit. Strangely enough, PHN tends to be believed, at least once I call it “nerve damage.” But I’m finding that CFIDS, anxiety, and depression are all doubted in their own ways.

Anxiety and depression, well, they’re in my head, right? I feel sad. I feel anxious. So do you. You can’t see my brain chemistry from outside my head so you don’t know how very important it was for me to take a medication that adjusts it. But if you’ve known me long enough you can tell the difference in my attitude and behavior.

As for CFIDS, well, what other chronic, debilitating, disabling illness gets greeted with comments of “I’m tired too”? If you saw me, an otherwise healthy looking 40-year old woman taking the elevator instead of the stairs and sitting down several times during a short walk, would you think I was ill or just lazy?

That’s the stigma of invisible illness. And it’s hard living with it. So next time you see someone “slacking off” give them a second thought and wonder if there might be something going on that you can’t see.


Written by tldegray

September 13, 2010 at 4:00 pm

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