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Posted Sep 11 2009 12:00am

This is a comment those with invisible illnesses hear quite often. The person saying this may mean for it to sound like a compliment. However, to someone who is really sick and in a lot of pain, yet their illness appears invisible to others, that 'compliment' may seem as though the giver does not understand or acknowledge what they are going through.

There are many examples of invisible illnesses such as Crohn's Disease, Multiple Sclerosis, Epilepsy, Fibromyalgia, Spinal Disorders, Lupus, Lyme Disease, Rheumatoid Arthritis, Cardiac Abnormalities, Brain Disorders, Sjögren's Syndrome, Hyperhidrosis, Autism, Diabetes, Scleroderma and many, many others. People with these illnesses and disorders may look 'normal' or 'well' but are often very seriously ill and/or in a lot of pain.

I'm often asked, 'How are you doing?' or 'How are you feeling today?' I used to try and explain how I was feeling and what my current state of health was, but it has just gotten to be too complicated. So now I will usually say, 'I'm hanging in there.' I've found it is the best answer and usually satisfies most people who don't really want to know all the details anyway.


In anticipation of National Invisible Illness Awareness Week, coming up next week, a poll was conducted of people who have an invisible illness. Participants were asked how they respond to this 'compliment that pulls at the heartstrings'. Here are the top 54 responses of the 1200 people who responded:

(Be sure to add your own at the bottom in the comments section!)

  1. I am hangin’ in there…
  2. I am so blessed. God is so good.
  3. Drugs are a wonderful thing
  4. I have my good days and I have my bad days.
  5. I clean up well.
  6. I have my ‘good’ days….but this isn’t one of them!
  7. Thanks, I wish I felt better.
  8. That’s a perfect example of how you can never judge a book by it’s cover.
  9. Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
  10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
  11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
  12. You should be on the inside.
  13. Thanks. I have more to be grateful for than I have to complain about - which means I have a LOT to be grateful for!
  14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
  15. …And that’s all that really matters, isn’t it?
  16. Powder and paint, make you what you ain’t!
  17. It took a lot of work to look like this.
  18. It’s God shinning through me.
  19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
  20. And you look so wise. Looks can be deceiving though, huh?
  21. I’m having a “good face” day.
  22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
  23. I do a great job hiding how I really feel. My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
  24. I’m trying my best to do well OVER my circumstances. instead of being under them!
  25. It’s up and down.
  26. 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!
  27. I’m not complaining about my looks.
  28. I’m very good at pretending.
  29. Good, because if I looked like I feel it would scare you to death.
  30. Actually, I still am really hurting…
  31. I am 36 years old outside but 85 inside.
  32. Thank you. I’m on my way to the Oscars.
  33. Thanks, I’m grateful for this good day.
  34. Things aren’t always what they seem.
  35. Praise God, I’m glad that He enables me to look so much better than I feel.
  36. Thanks, that’s God’s joy shining through!
  37. Have you ever heard of The Spoon Theory?
  38. I am upright which is better than the alternative.
  39. Thanks, want to swap bodies for a few days?
  40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
  41. Thanks. I like good days.
  42. Want to step inside my skin?
  43. It’s amazing what a shower can do. I guess I am all cried out for now.
  44. Thanks…I wish I felt it!
  45. I’m not complaining about my looks.
  46. I’m very good at pretending.
  47. Looks can be deceiving. (and smile)
  48. Thank God for makeup!
  49. Thank you for caring. I try to act like I feel better than I really do.
  50. Thanks, I am trying to, even though it will never go away. I just try to remember things could be worse.
  51. I’d be great if it wasn’t for the pain.
  52. I’d complain but who wants to listen.
  53. If I can’t feel good, at least I am determined to look good!
  54. I’m in good shape for the shape I am in!

If you have an invisible illness, what do you say? Or what would you say if you could say anything?

This list is compliments of National Invisible Chronic Illness Awareness Week at, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

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