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 where research was not definitive and findings inconclusive.
Why the shroud around us?