30 Things About My Invisible Illness You May Not Know

I’ve written this post for Invisible Illness Awareness Week. You can find more ’30 things’ posts and instructions for doing your own at this link.
  1. The illness I live with is: ME/CFS (Myalgic Encephalomyelitis, sometimes diagnosed as Chronic Fatigue Syndrome)
  2. I was diagnosed with it in the year: 1996 but I recovered completely in 2001 only to be struck again in 2008.
  3. But I had symptoms since: 1996
  4. The biggest adjustment I’ve had to make is: Giving up my very active lifestyle. But actually there’s so many huge adjustments I’ve had to make. I’ve had to give up my career (twice). I’ve had to totally change my diet. Every aspect of my lifestyle has had to change in order to get the most out of the very limited energy I now have. 
  5. Most people assume: I’m just a bit tired.
  6. The hardest part about mornings are: waking up every day feeling like I have the flu and a hangover at the same time.
  7. My favorite medical TV show is: None.
  8. A gadget I couldn’t live without is: my laptop
  9. The hardest part about nights are: being exhausted but struggling to get to sleep
  10. Each day I take 18 pills & vitamins. (No comments, please)
  11. Regarding alternative treatments I: have tried several, all of which have offered a little help, without making any real difference (apart from one exceptionally talented acupuncturist). But the biggest benefit is having someone believe in you and be your ally in your fight for better health.
  12. If I had to choose between an invisible illness or visible I would choose: Irrelevant, overcoming our individual challenges is what makes us who we are.
  13. Regarding working and career: Having lost 2 careers to this illness I’m now embarking on a 3rd. I am setting up an internet life coaching business so that I can work from home and manage my hours to fit with the way my illness limits me. I believe that we all have special gifts that we can express in a number of ways. The trick is to find ways of expressing our talents which fit with optimal illness management.
  14. People would be surprised to know: I’m happier now than before I got ill. I’ve learned that happiness isn’t about what happens to you but about what you pay attention to.
  15. The hardest thing to accept about my new reality has been: Not being able to be spontaneous. My day has to be so carefully planned and paced.
  16. Something I never thought I could do with my illness that I did was: Travelling around South America for 6 months.
  17. The commercials about my illness: The are none!
  18. Something I really miss doing since I was diagnosed is: Dancing (for hours on end!)
  19. It was really hard to have to give up: Everything the first time: job, sports, fun, spontaneity, social life, food’s I love etc. The second time it was much easier to adapt because I knew I had to.
  20. A new hobby I have taken up since my diagnosis is: writing and crochet
  21. If I could have one day of feeling normal again (without any consequences) I would:  Spend the morning hiking, the afternoon cooking a meal for my friends (with no worries about avoiding gluten and sugar) then after eating we would go out dancing.
  22. My illness has taught me: To appreciate the little things and live in the moment.
  23. Want to know a secret? One thing people say that gets under my skin is: ”yes I’ve been tired recently too.”
  24. But I love it when people: See me as the whole person I am and was, and respect the challenges I am overcoming.
  25. My favorite motto, scripture, quote that gets me through tough times is: ‘grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference’.
  26. When someone is diagnosed I’d like to tell them: to aim for relaxed effortlessness in all that they do.
  27. Something that has surprised me about living with an illness is: How difficult it is for most people to understand without judging you some way.
  28. The nicest thing someone did for me when I wasn’t feeling well was: Take me out somewhere beautiful and be content to have a short slow stroll, adapting to enjoying the low energy excursion in the same way I have to.
  29. I’m involved with Invisible Illness Week because: I want to help raise awareness.
  30. The fact that you read this list makes me feel:grateful that you are interested and that you care.

3 thoughts on “30 Things About My Invisible Illness You May Not Know”

  1. I’ve been suffering from ME for about 2,5 years and have recently been diagnosed finally. I’ve been using doterra for years and i found your website googling for ME & doterra protocols. I haven’t found any yet, but i’m grateful for the blogs you wrote about ME. Thank you for sharing.


Leave a comment