Understanding and Coping with My Chronic Pain as an Invisible Illness

Karen Lee Richards Health Guide
  • 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.

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    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.

    27. Something that has surprised me about living with an illness is:  how drastically it can change your life.

  • 28. The nicest thing someone did for me when I wasn’t feeling well was:  clean my house.

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    29. I’m involved with Invisible Illness Week because:  I want to do whatever I can to help others who are suffering and to educate the public about the impact invisible illness can have on a life. 

    30. The fact that you read this list makes me feel:  like you care and want to make a difference, too.

    You can find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

    I'll be speaking on “Helping Others Understand Your Pain” Thursday, Sept. 17 at 8:30 pm EDT (5:30 pm PDT).  I'd love to have you join me. 

    If you would like to participate in this meme, just copy the questions and fill in your own answers.  You can do it in your own SharePost, or comment below.  Help us spread the word!

Published On: September 16, 2009