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Tuesday, November, 24, 2009
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30 Things About My Invisible Illness You May Not Know

Karen Lee Richards
Karen Lee Richards
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Co-Founder of the National Fibromyalgia Assn.

Karen Lee Richards’ career as a writer and patient advocate grew...

Karen Lee Richards

Wednesday, September 16, 2009
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Each September, National Invisible Chronic Illness Awareness Week is observed to help educate the public and raise awareness about invisible illnesses.  This year, one of the blogging activities is a "meme," entitled “30 Things About My Invisible Illness You May Not Know.”  Here's mine...

1. The illness I live with is:  Fibromyalgia and ME/CFS

2. I was diagnosed with it in the year:  1996

3. But I had symptoms since:  1989

4. The biggest adjustment I’ve had to make is:  accepting that there are things I just can't do anymore.

5. Most people assume: that chronic fatigue syndrome just means you're tired.

6. The hardest part about mornings are:  everything!  I don't do mornings.

7. My favorite medical TV show is:  I don't currently watch any medical shows.  I used to like Strong Medicine.

8. A gadget I couldn’t live without is:  my computer.

9. The hardest part about nights are:  not being able to call people because they're sleeping.  I'm a night owl and usually work all night, then sleep all morning.

10. Each day I take 34 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:  use acupuncture and myofascial release therapy – and love them!

12. If I had to choose between an invisible illness or visible I would choose:  visible

13. Regarding working and career:  I'm thankful for computers and the Internet which allow me to work from home so I am able to continue to support myself. 

14. People would be surprised to know:  that wearing clothes is painful.

15. The hardest thing to accept about my new reality has been:  the physical limitations it has caused.

16. Something I never thought I could do with my illness that I did was:  have a career helping others who have similar illnesses.

17. The commercials about my illness:  have done so much to improve awareness and understanding of fibromyalgia.

18. Something I really miss doing since I was diagnosed is:  having an active social life.

19. It was really hard to have to give up:  ballet dancing.

20. A new hobby I have taken up since my diagnosis is:  scrapbooking

21. If I could have one day of feeling normal again I would:  take my grandchildren out for a day of fun.

22. My illness has taught me:  to prioritize – to spend what little energy I have doing the things that are most important to me.

23. Want to know a secret? One thing people say that gets under my skin is:  If you'd just exercise more, you'd feel better.

24. But I love it when people:  understand that just because I can't go somewhere or do something with them doesn't mean I don't care. 

25. My favorite motto, scripture, quote that gets me through tough times is:  And we know that all things work together for good to those who love God, to those who are the called according to His purpose. – Romans 8:28

26. When someone is diagnosed I’d like to tell them:  to take charge of their healthcare – learn everything they can about their illness and advocate for themselves.

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