21 March 2008
Published in the Sydney Morning Herald Health & Science Supplement 7/4/05
Posted by Amanda Reid under: General .
FIRST PERSON
What did you do to your leg?” I have a plethora of stories invented for strangers who ask about the origin of my limp, which comes and goes. An old sports injury, vigorous sex, falling while dancing hip-hop in the shower …
When your life is substantially affected by an illness, it can be difficult to avoid the topic with new acquaintances. It is just as tricky when the illness is not immediately obvious, as natural conversation tends towards the inevitable question “And what do you do?” Er, well, I’m not really doing that much right now, just taking it easy.
My uncertainty is because I’ve been diagnosed with chronic fatigue syndrome. There is no real explanation or cure for CFS; no test or proof to say: “This is what’s making me feel ill.”
As a young person, I often feel an undeserved sense of shame and a definite wariness when discussing the condition, even with doctors. I know that it is a weird condition; the intensity of the fatigue and weakness can change from day to day. There are different levels of disability (some people can work, others are bed-bound for years) and the collection of extra symptoms varies considerably among patients.
While the exact nature of chronic fatigue syndrome remains a mystery, CFS has been classified by the World Health Organisation as a disorder of the brain. Telling people I have chronic fatigue syndrome can actually result in a short laugh and comments like, “I must have it, too, especially after a big night out with the boys.” I don’t laugh as loudly.
Sometimes, people ask me if CFS is the same as depression. No, it is not, although drugs initially developed for depression may also help with CFS. Thankfully, I am able to enjoy things, even when I am lying down. Especially if someone is lying down next to me.
Use the term “neurological illness” and people don’t tend to start suggesting potential cures. The mention of CFS, however, more often than not prompts recommendations of ice baths, green tea, organic vegetables, vitamins A-Z or meditation. But, wait, there’s more: acupuncture, Chinese herbalism, homeopathy, iridology, counselling, reiki healing and just about anything else one can think of.
Well-intentioned people will sometimes suggest a particular practitioner. If I mention that I have already seen several practitioners of (insert random alternative therapy) who were unable to help, they insist that I chose dud practitioners. Where do I stop? It can seem like there are so many “cures” that it’s a wonder the illness exists at all. After trying many of the above, it is no wonder that my bank account is similar to my energy levels.
All this aside, I do understand that these suggestions are given with a desire to see me well, and I appreciate it when people want to know more and respond with empathy. I am touched by how considerate my family and friends are towards me: chauffeuring me about, coming to visit and being aware of simple things like the need to sit rather than stand if we are out.
Thank you for your willingness to listen to my complaints, discuss my new medications and accept my illness as a part of your lives, also.
Contact the ME/Chronic Fatigue Syndrome Society of NSW on9904 8433. CFS Awareness Day is Thursday, May 12.
Comments are closed.