Friday, August 14, 2009

Dealing With an Invisible Chronic Illness - But, you don’t even look sick!

For those of us with an invisible chronic illness such as Lupus, Rheumatoid Arthritis or Fibromyalgia, hearing the words “but, you even look sick” can be quite frustrating. That frustration comes from the fact that you are in fact sick and people do not understand how sick you really are. This is a big misconception that lies in the lack of understanding of an invisible chronic condition.

National Invisible Chronic Illness Week runs September 14 -20, 2009. In anticipation of this week’s awareness event, the committee asked 1200 people suffering with an invisible chronic illness to take a survey relative to how they looked compared to how they felt.

For more information on this year’s awareness week, visit Bloggers Unite or the Invisible Chronic Illness group site.

When I talk about having Rheumatoid Arthritis and Fibromyalgia, and I then “you don’t look sick” response, I am not sure how to respond. Sometimes I find it frustrating and sometimes, I am just relieved that I do not look sick. Other times, such a statement can be difficult depending on the individual saying it. Our friends and families “should” try to understand what we are dealing with on a daily basis, but quite often they do not. My mother has had osteoarthritis for several years now and until my own recent diagnoses within the last two years, I couldn’t even begin to understand. Perhaps, I am not one to judge others feelings, but when you hurt so much, that is a task in itself. I have learned that the world’s problems seem so small now that I am just trying to make it through the day, and focus on my health, resting and just feeling better.
I believe is awareness will lead to cures for these otherwise invisible illnesses. So, I ask each of you who read my blog to pass this information along. Please tell everyone you know about National Invisible Chronic Illness Week which runs September 14 -20, 2009. The goal of the yearly event is to increase awareness of invisible illnesses.

Did you know that half the American population has some kind of chronic condition and 96% percent of those people suffer from an invisible condition? If you or someone you love suffers from an invisible illness, you can understand that awareness is vital. Please spread the word. Bloggers can participate by uniting efforts to increase awareness online and share experiences. There is a badge available at Bloggers Unite so please pick that up and place it on your blog. For more information on when and how to blog, visit Bloggers Unite.

Last, I just wanted to remind you of RA Guy’s Awareness Campaign called The Power of Ten. Take ten minutes over the next ten days and talk to at least ten people about rheumatoid arthritis. Real awareness comes from real people!

The list below comes from the responses to that survey by the National Invisible Chronic Illness Awareness Week committee.

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 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!

What do you say? Or what would you say if you could say anything (keep it clean!)

* This list can be reprinted. Please add the following at the end: 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.


  1. I like answer #12: You should be on the inside.

    While I have been blessed, I have a strong mom afflicted with cancer. And I have a dear friend with Crohn's. And it tears me apart to hear people say that they don't look sick because I know how much they hurt.

    I'm glad you blogged about this. Hopefully it will greater raise awareness!!

  2. Thank you for bringing awareness to chronic illnesses. I have endometriosis and get the same thing. People think I'm fine, but I'm not.

    Have you read the Spoon Theory?

  3. Thanks for the link Ya-ya. It gives me a better idea on how to explain RA and fibromyalgia to people who just dont get it.

    Mom2Amara - I am sorry for what your mother and friend are going through. 50 percent of the US population suffers when an invisible chronic condtion. 96 percent of those do not look sick.


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