Tuesday, September 8, 2009

What You See, How I Feel: Life with Invisible Illness #iiwk09

Masked.Image by Andi♥ via Flickr

I think the hardest part of having an invisible illness is not looking sick. How I look leads many people to think that maybe I am not sick after all or perhaps I am getting better. I wish that either one of those two things were true. Sadly, they are not.

So when someone says to me, "You look good today!" I am suddenly tongue-tied. I mean, seriously? Because this is what I am thinking: I haven't showered in a few days because showering is a workout, I have the schlubbiest clothes on because I desperately need to do laundry and have been too exhausted to do it, I gave up on wearing make-up and blow-drying my hair because it hurts too much to use my hands that much and it is taking all the energy I have to be outside the house and doing what I need to do. And when I get back home I'll need to rest for the reminder of the day to recover from this outing. Oh, and regardless of how I look, I am (still) experiencing moderate to severe pain and moderate to severe fatigue 99.9% of the time.

But I look good anyway? Really?

After reading the article
54 Ways You Say You Respond to “You look so good!” at Invisible Illness Week I think I need to develop a better vocabulary when it comes to talking to other people about my invisible illnesses. Here are some ideas from that article for witty retorts when someone says, "You look good today!" that I am going to try on for size:
  • I am hangin’ in there… (which I use ALL the time!)
  • Drugs are a wonderful thing
  • I have my good days and I have my bad days.
  • I have my ‘good’ days….but this isn’t one of them!
  • Thanks, I wish I felt better.
  • That’s a perfect example of how you can never judge a book by it’s cover.
  • Thanks, but there are many aspects of fibromyalgia which you don’t see...
  • I’m having a “good face” day.
  • It’s up and down.
  • I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
  • I’m very good at pretending.
  • Good, because if I looked like I feel it would scare you...
  • Actually, I still am really hurting…
  • I am 36 years old outside but 85 inside
  • Things aren’t always what they seem.
  • Thanks, I guess I am fortunate that I have an illness that can’t be seen.
  • Thanks. I like good days.
  • Thanks…I wish I felt it!
  • I’m very good at pretending.
  • Looks can be deceiving. (smile)
  • Thank God for makeup!
  • I try to act like I feel better than I really do.
  • I’d be great if it wasn’t for the pain.
  • If I can’t feel good, at least I am determined to look good!

So what do you think? What would you say if you were in my position? Leave your thoughts in a comment below.

This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillness.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week this year during the week of September 14-20, 2009, including their 5-day virtual conference online.

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