My Face … My Strategy
Posted: under May.
Tags: aware, chronic, Chronic Fatigue Syndrome, communities, face Comments (7)
Saturday, May 8, 2010
It’s not enough for me to let you know I have Chronic Fatigue Syndrome and I don’t feel good.
I want to give you details, about an astonishing variety of stultifying symptoms that are real life-stoppers. And I want you to be haunted by a chronic with a face. If it’s me, well and good. If it’s someone else that’s fine too.
But somehow people have to be touched by this devastator and destroyer. We are a huge part of the population, and yet nobody hears about us.
We have chronic blogging communities which is a good thing, because we need the contact. And within our small communities we share information with each other, friendship with each other … a world with each other.
But the outside world, the one you live in, never even hears of this condition. Like it’s not real. Unless you happen to know someone who has it but … it’s a mystery. Nobody understands it.
This is true. Nobody does understand it. We only know bit and pieces of things, that we try to make hang together as we grapple with it. We are doing a better job, getting more data than ever before.
But our media largely ignores us. Our medical community, researchers, funders, largely ignore us. Our communities largely ignore us.
So I am putting a face to this crippling disease. I am giving you an insider’s view of what it’s like to be bound and gagged year in and year out by illness.
Other chronic writers are doing the same thing. None of us will touch every one. But if enough of us do it, telling our stories, sharing our tragedies and our losses, some of it’s going to raise awareness with real people. The people who read articles like this, who care about their own health and other people’s health and well-being.
And maybe eventually there will be enough people who have become aware of how our lives have been crushed and consumed, that they might make a difference with the institutions who don’t seem to care about us …. and so easily pass us by …
Tags: aware, chronic, Chronic Fatigue Syndrome, communities, face
Beautifully said, Jody - as always. You rock.
Great post. I agree with you, and that’s why I’ve kept blogging for a few years now, even though sometimes I feel like I’m whispering in a football stadium.
What you said is so true: “None of us will touch every one. But if enough of us do it, telling our stories, sharing our tragedies and our losses, some of it’s going to raise awareness with real people.”
[...] My Face … My Strategy “It’s not enough for me to let you know I have Chronic Fatigue Syndrome and I don’t feel good. [...]
[...] My Face … My Strategy “It’s not enough for me to let you know I have Chronic Fatigue Syndrome and I don’t feel good. [...]
I’m with you Jody on all this, Jody.
I have found, though, that many people would actually rather not know because it frightens them. So I have the choice to be silent out of consideration for their feelings - or keep singing.
Laurel,
Thanks.
Greenwords,
That’s why we do what we do, eh? Eventually there will be enough of us writing that we will get through to the rest of the world.
Signs,
Reckon we just keep on singing then.
[...] My Face … My Strategy – Jody [...]