I know people who've had chronic fatigue syndrome for over 30 years. I myself have dealt with it for 18 years. This illness has quite a history. Yet public awareness is astonishingly anemic. How can this happen with an illness so crippling, that destroys so much productivity, and therefore is so detrimental socially and economically?
We are a huge population. Our own CFS ghetto, essentially unheard outside the chronic community. We have some dedicated champions in here, who write for us, research for us, fight for us. But for some reason they are not heard out there.
When was the last time (or the first time?) you heard anything in the news about CFS?
That's what I thought.
Here are ten ways we're still invisible.
1) Unknown as individuals
As people chronically ill, isolated from the world, unwilling members of a grotesque club or Secret Society, we often feel like phantoms.
If we disappeared today, would anyone notice we were gone?
2) Unrecognized within our communities
Many people have never heard of CFS, by any of its names -- not chronic fatigue immunodeficiency syndrome, nor CFIDS, not myalgic encephalomyelitis, nor ME. Why haven't they heard?
Is it up to us, the ill, to promote awareness? Apparently.
3) Lack of understanding
Some people, thanks to the non-existent drive for public awareness, don't take our illness seriously, and admonish us. Everybody gets tired. It's all in our heads.
Those are the few moments when maybe we'd like to be invisible. Or wish they were ...
4) Little media support
There was a possible breakthrough last fall, concerning the retrovirus XMRV. Research ongoing, outcomes uncertain. Except for a precious handful of articles and interviews, the retrovirus XMRV raised hardly a blip in the news. The flu got more press.
We're told the research was not definitive and the findings inconclusive. But a good portion of what I read in the news is reporting on studies for other conditions where research was not definitive and findings inconclusive.
Why the shroud around us?
5) Little community support
I love the fact that there are groups that offer support and education for cancer, Parkinson's, muscular dystrophy, and other illnesses. Where would these sufferers end up, without able-bodied people to advocate for them, work for them, and care for them?
Well, I'll tell you. They might end up like us.
6) Little research support
CFS research is woefully short on funding. Are there not enough of us? Our numbers are huge. Are we not sick enough?
Many of us can't work. Others are completely incapacitated, bedridden or in wheelchairs. Many are homeless.
7) Little financial support
The odds against getting disability are high. Despite the fact that many of us can't function well enough to fix our own lunch, let alone go to work.
I'm one of the lucky ones. I work on the net. I couldn't stand in a store or sit at a desk or even handle a daily commute to work.
8) Doctors who doubt our veracity ...
Some doctors won't treat us because they say, they don't "believe" in chronic fatigue syndrome. What does that even mean?
9) ... and refuse to acknowledge our illness
Many in the medical community apparently don't know what to do with us and sweep us under the rug or turn us away. Some say we're either consciously pretending to be sick — because who wouldn't want our luxurious lifestyle? — or psychologically disturbed.
10. Little active support
We have few advocates or lobbyists or activists outside our own CFS ghetto. We're very grateful to those few willing to fight in the face of such odds. But we need so much more. Other illnesses are given so much more support.
Where are the healthy people to undertake for us? Where are the Walk-a-thons? The spaghetti dinners?
Where are the public service announcements? Where are the lobbyists?
It dawns on us that we may have to do this ourselves. And those of us who are higher functioning are uniting as best we can to create awareness, to amplify the voices of CFS that cannot rise above a whisper. You will be hearing more from us.
I spent 15 years losing the battle against chronic fatigue syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.