Today is blogging for Chronic Fatigue Syndrome/ME Awareness Day.
The one thing I knew going into the Neurologists office was that I more scared of getting diagnosed with CFS/ME than with a neurological condition which had a chance of killing me in 5-7 year. Lupus? Sign me up! Anything but Chronic Fatigue Syndrom/ME. Why was I so afraid? It wasn’t because I was ignorant of CFS/ME but rather I knew both of it and what society thought about those who had it.
Certainly, I know, like many with chronic/neuro conditions about Fatigue, but CFS is more than that, and the stigma attached to this condition, a disease, a disability few will try to understand is horrific. In watching a special program on CFS/ME I learned it was nothing new, having had outbreaks since the 50’s (the people were put in “sanitariums” aka mental asylums), and the famous outbreak in the 70’s which the CDC refused to investigate. Leaving a doctor out there still storing over 1,000 samples, waiting until the day the CDC decides it cares. He told tales of people who killed themselves willing their body to the center of disease control for an autopsy. They were willing to die “if only this can be proved to be a real disease.” The CDC cremated the bodies as no autopsies are held for suicides from people with mental illnesses.
So yes, a disease in which some will recover a portion of their abilities after years and no one knows why; a disease which puts you into a silent empty space where “The world” continues on, but you do not. Each day is lived, survived and your progress against personal goals in measured in inches while the one word on the lips of someone, whether relative, doctor, PT or what used to be a friend is “lazy”, “Just doesn’t want to try.”
Laura Hilldenbrand who wrote the best-selling book Seabiscuit (made into a film), does not do signings, or appear at bookstores because she has CFS/ME. In fact, it was the fact the someone could do something “successful” and yet openly admit that they have a condition which debilitates them in the way CFS does which brought North America slightly away from names like “yuppie flu”. We live in the west were what you “Do” defines you, so how to classify a woman who was bedridden for six years, then worked on the book for four more? Is she a success, lazy, or unbelievable determined in reclaiming herself against a misunderstood condition? Finishing the book caused a severe relapse and in a quote from Laura which most CFS/ME people can identify with “You want so much to defy this illness and live on your own terms. I hoped I could get away with it, but I couldn’t.”
You live, but not like others. Yet people have CFS/ME and do work, as they can, take care of children, as they can, focus themselves on the victories of progress measured against the realities of their condition and the goals they set themselves. Because who else will understand what it takes for someone with CFS/ME to finish a year of school or uni; to continue, as they can, on an ongoing art, photography, writing project. Respect those who live with CFS, as they have to listen to not only the voices from society but the voices within themselves, that they “should” do more, or “I heard this works” all the while trying to staying on track in completing something that is important to them. Something that might take an able bodied person a day or two.
I remember the first major hill I did in my manual wheelchair, a chair I had been told I was “too weak” to use, and would be “too painful” to operate. I did it on oxygen and I did it four inches at a time. And when I got to the top, I knew that the people walking by, talking on their lunch breaks did not care or notice that as an accomplishment. Yet for me, I had accomplished in my will and heart as much in the time it took me to make it to the top, and not give up, as when I was able bodied and ran the LA marathon.
People with CFS/ME go on, and I cannot articulate their life but I can ask that people remember and honor the accomplishments which occur behind curtains and closed doors. That often iron will and an ability to accept the bad, the pain, the vertigo, the fatigue and yet STILL look ahead to completing the hearts desire is one which should be acknowledged.
No, someone with CFS/ME is not going to be getting headlines for doing seven marathons in seven days or wheeling across some country. In fact, they are likely not to be getting headlines at all as their illness cocoons their life away from public view. But thanks to the internet and people like RachelCreative, we can see and hopefully understand more about the day to day, hour to hour life of CFS/ME (click the link to read other bloggers on CFS/ME).
As a follow-up, I did, at two later meetings, ask the Neuro if maybe she was wrong and I DID have CFS. Or to put it bluntly, I decided I would rather openly acknowledge my prejudice and fear of what people would think of me and live, than have a “cool” or socially acceptable condition and not. And that’s what people forget, people with CFS/ME do live, do have good times, do laugh, do spend the same minutes of a day as everyone else, just not in the same way. It is just many of us don’t hold on so long, or have to mentally fight so hard, for that oasis of energy.
11 minutes ago