96% Invisible

Invisible Illness Awareness Week 2015 runs September 28 - October 4 this year.
In Sickness + In Health will be participating here on the blog and on social media.

Since it's Invisible Illness Awareness Week, I want to take this chance to talk about the blurry line between what is visible and invisible. Up to 96% of chronic conditions could be considered invisible illnesses, but they're often not totally invisible.

Invisible Fight

I walked into my doctor's office yesterday and he immediately asked me if I was okay because I "looked pale," which of course made me laugh, because I'm always a whiter shade of pale. It's actually kind of nice when someone picks up on the fact that I'm not doing so great (I never am, but some days, like yesterday, are worse than others). Most people wouldn't notice a difference between a day that I'm feeling my normal level of sucky, and days when I'm even more exhausted and dehydrated and all around shitty. Living with an invisible illness makes compliments like "you don't look sick" into deeply hurtful barbs, and statements like "you don't look so good" into a validating sign that someone has been paying careful attention.

The thing about invisible illnesses is a lot of them actually aren't totally invisible. Diabetics may have an external insulin pump or pin pricks from testing their blood sugar regularly. IBD patients may have significant weight loss from malnutrition, and autoimmune patients in general may have significant and sudden weight gain or moon face from steroid treatment. Fibromyalgia and other chronic pain patients may wince every time they move. Lupus patients sometimes develop a characteristic rash on their face, but if you didn't already know that, you might think they were blushing or overheated.

What might be invisible to some, may be obvious to others. It's a matter of looking a little closer, and knowing what to look for.

Look Closely

My illness(es) isn't totally invisible either, it's only invisible when you don't know what you're looking at or not paying attention.
If you did know what you were looking at, you'd see:

  • How most of my joints bend a bit backwards and I wince every time I have to move; you'd definitely hear those joints snap, crackle, and pop, even with slight movement.
  • How odd lumps and dimples appear when my bones shift out of their rightful place in their respective joint capsules.
  • How my face turns (extra) white and my feet turn purple because my blood is pooling in the bottom half of my body after standing for a while.
  • How I bump into things and tip over easily because of my impaired proprioception.
  • How profusely I sweat sometimes when it's not even hot out.
  • How I shiver and turn blue sometimes when it's not even cold.
  • How regardless of my body temperature, my hands always shake.
  • How I'm covered in stretch marks; the ones that appeared overnight without gaining any weight.
  • How I've gained 40 pounds in the last year from medication side effects and reduced activity due to pain and fatigue; ironically no new stretch marks.
  • How translucent my skin is and all the veins it's supposed to hide underneath.
  • How sometimes I use a cane or cervical collar or compression tights on days when my pain levels get too high.
  • How often I have to wear sunglasses indoors because of my chronic migraines.

Those are just a few of the ways my invisible illness isn't so invisible. Would other people be able to see your invisible illness if they knew what they were looking at?

You can read more about the visibility of invisible illnesses on the Invisible Illness Awareness Week website.