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What Do ME/CFS Awareness Days Accomplish?

The last two awareness days this year have left me wondering how useful they are and whether they actually do any good for the ME/CFS movement. I think they are important to have because someday they will help raise awareness. But my experience this year has been one of disappointment, disillusionment and a fruitless waste of energy.

I put a lot of energy into posts for ME/CFS Awareness Week and Severe ME/CFS Awareness Day. I saved them for months waiting to post them on these special days. They were really important posts that I wanted to reach as many people as possible, which is what I thought awareness days would be all about.

But instead, they reached about 10% of the people that my posts on other days reach. I wound up just throwing away two of my best, most important posts. What I wrote for Severe ME/CFS Awareness Day this year I think is the best thing I’ve ever written and hardly anyone saw it. This put me into a state of sadness that took a couple days to work through.

I think on these awareness days, a lot of us push ourselves to come up with special posts or projects to try to spread awareness and understanding about ME/CFS, and burn ourselves out doing so. And then on the day, these people are too exhausted and crashed to actually see what everyone else has put out there.

And I think the rest of the ME/CFS community is so inundated with things to look at, they wind up overwhelmed and can’t look at it all or find it all.

The thing is that right now, we are not reaching outside the ME/CFS community with these projects and posts on awareness days. We are preaching to the ME/CFS choir. I feel that right now, it just exhausts us all and doesn’t accomplish anything. I will from now on avoid posting important writings or projects of mine on awarenesses days and post something more simple instead.

It is important to have these days though, because some day when the world knows about our disease, they will help spread awareness outside the ME/CFS community. And it’s good to establish these days now so they have a history and become tradition. So we should hold onto them. But maybe we don’t need to put so much effort into projects and writings for these days that we burn ourselves out, crash and hurt ourselves.

I’m not trying to discourage any of you or saying we shouldn't do our best to advocate, speak out and spread awareness in general. We should. I'm just expressing how I feel and what I’m thinking right now about awareness days. <3

Ultimately if we keep throwing everything we’ve got at the wall it will keep crumbling and eventually fall down.

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.








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