Friday, August 5, 2011

"But you don't look sick!"

Sigh. It is such a burden to appear in positively rude good health when you feel like death warmed up on the inside ;)

Truly, if I have heard it once I have a thousand times - people are astonished to hear my "laundry list" of health woes, claiming I just don't look sick. Perhaps they would be more convinced if I had bits dropping off or poxy sores all over my face? I don't know, but what does "sick" look like anyway?

I am "blessed" with multiple, chronic health issues -
  • multiple sclerosis
  • fibromyalgia
  • cysts on my thyroid
  • depression
  • back and neck problems
Because I am open about my health - including mental health - I find myself explaining things in conversations with family and friends, along the lines of:

"I didn't know you were depressed - you always seem so happy" - that must be the drugs and therapies working then. That and the fact that when I am having a really bad day I am most likely at home under the doona, not out and about.

"You wouldn't know you had MS from looking at you" - yay! I have the invisible version, where the impact on the central nervous system is less motor skills and more cognitive skills, less mobility and more sensory. I don't use a walking stick, frame or wheelchair: most people with MS don't. But more money is raised for research with images of chair-bound people than those who walk and talk!

"You don't seem to be in pain when I am with you" - Drugs are good! I live on pain-killing medication to manage my chronic pain in my lower back, neck and shoulders and the flare ups of fibromyalgia pain in my joints and connective tissues. I religiously visit my chiropractor. I avoid activity which will aggravate my conditions - and I just put up with it mostly. If you greeted me with "Are you in pain today?"  (yes) instead of "How are you today?"(okay) I would answer differently!

"But you do so much!" - but there is so much I don't do: I pay a third of my salary to a house cleaner; I am in bed 12 hours every night; I rarely go out in the evenings; I only prepare two meals each week; I rely on online shopping; I miss activities I want to do because of pain and fatigue ... but sharing news about the things I do is much more interesting than whining about what I don't!

So, next time you meet with someone who admits to chronic illness, don't tell them they don't look sick (because that sounds like you think they are faking it or deluded) instead, ask them how they are doing with that. Instead of declaring they look well, ask if they feel well? Instead of complaining about what they don't do, ask if there is anything you can do for them.

If you want to know more about the secret lives of people who don't look sick, check out this excellent website

If you ever here me referring to energy as "spoons" and worry I have lost the plot altogether, relax - this explains what I mean The Spoon Theory.

And me? I'm off to the doctor!

1 comment:

Kim | The Whimsical Woman said...

I SO relate, my Fibro sister! Thank you for speaking this truth for all of us who struggle daily with invisible illness! Gentle hugs! :)