Friday, September 18, 2009

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know (

1. The illness I live with is: Chronic Fatigue Syndrome (CFS) & Fibromyalgia (FM)

2. I was diagnosed with it in the year: 2002

3. But I had symptoms since: 2001

4. The biggest adjustment I’ve had to make is: I can no longer do the things I love - dancing, swimming, running, anything that requires energy

5. Most people assume: It's all in my head

6. The hardest part about mornings are: Never feeling well rested or refreshed

7. My favorite medical TV show is: Gray's Anatomy

8. A gadget I couldn’t live without is: My laptop. It's my link to the outside world.

9. The hardest part about nights are: Lying awake for hours...not being able to sleep because of the pain.

10. Each day I take __ pills & vitamins: 11 (which is less than most people with CFS/FM)

11. Regarding alternative treatments I: have tried homeopathy, naturopathy, acupuncture, pranic healing, yunani - none of these have worked. I have found that yoga helps if ptacticed regularly.

12. If I had to choose between an invisible illness or visible I would choose: Visible. At least people would be able to see that I'm not making it all up.

13. Regarding working and career: Had to give up in 2002 because of my illness.

14. People would be surprised to know: I have been exhausted for 7 yrs. And in pain almost all the time. I try not to make a big deal about it, but it is a huge deal to me.

15. The hardest thing to accept about my new reality has been: That I (or anyone else) don't understand my illness. I don't know whether a cause or cure will ever be found for it.

16. Something I never thought I could do with my illness that I did was: get my yoga teaching certificate

17. The commercials about my illness: Have just started. I'm glad people are beginning to recognize fibromyalgia as an illness. Unfortunately still nothing about CFS.

18. Something I really miss doing since I was diagnosed is: Running. Dancing. Working. Studying. Being self-reliant.

19. It was really hard to have to give up: my life as it was.

20. A new hobby I have taken up since my diagnosis is: Gardening (well, I just started 2 days ago)

21. If I could have one day of feeling normal again I would: go sky diving followed by dancing all night.

22. My illness has taught me: the importance of being healthy.

23. Want to know a secret? One thing people say that gets under my skin is: Snap out of it (well, duh, thanks...that never occurred to me for 7 years). If you can't say anything helpful, pls don't say anything.

24. But I love it when people: people help me in the most unexpected ways.

25. My favorite motto, scripture, quote that gets me through tough times is: "This body is perishable, consciousness is of a nature to dissolve, and all objects of clinging are impermanent, suffering and subject to change." The body is only a temporary vehicle. It is my soul that will continue. And my soul is only a part of the Universal consciousness. So why despair for the body?

26. When someone is diagnosed I’d like to tell them: Learn to listen to your body. Rest before you get tired. Don't compare yourself - not to anyone else and not to yourself before you got ill.

27. Something that has surprised me about living with an illness is: Millions of dollars (& pounds) are being spent on researching CFS, over 1 million Americans suffer from it, yet we are nowhere close to discovering what it is or to finding a cure.

29. I’m involved with Invisible Illness Week because: I want people to recognise that an invisible illness can be as debilitating as a visible one.

30. The fact that you read this list makes me feel: Happy, that you cared enough to read it.


  1. I have to say that in the beginning I didn’t quite understand what you were going through. I probably never really will. But knowing you for as long as I have and seeing you through your good days and bad days, I’ve found respect in your perseverance; your continued effort to hope for a cure and in the meanwhile live life to the fullest. I love that you are writing this blog. I believe that a part of you healing may be reaching out to people with the same condition and helping them understand theirs.

    I will continue to live in the hope that on a good day sometime soon we will be wearing pink patent pumps and dancing all night :) Love you.

  2. Thanks Seema. It's having friends like you that make it easier to get through the days :)

  3. Great answers, and so true. I look forward to reading your posts.

  4. Thank you so much for sharing. I wish you good health.

  5. It is good to set down how you feel and keep a record of your symptoms sometimes that record can be invaluable like in my case. I was diagnosed with ME/CFS and after 4 years a chance course of Amoxycillin improved my symptoms and led my GP to suspect Lyme Disease. With tests leaving 50% of people with false negative many ME/CFS patients are not properly assessed for lyme.
    Inspite of the controversy GP treated me on long term antibiotics and I am now 100% I was so lucky.
    Have a look at my story and links on my blog the one on ME/CFS/Lyme is a real eye opener.

  6. I just found your blog and I loved this list you've written up. So many of them apply to me. I've had CFS since 2001 and had to give up my teaching career as a result. It's been a long, hard road but I'm learning to live this new life and to appreciate some of the things that at first were so devastating to me, like the isolation.

    I look forward to reading more of your posts.

    My best,

  7. Thanks for your comments Toni. I'm looking fwd to reading your blog and getting to know you. :)