International ME/CFS and FM Awareness Day is May 12: The World Will Know

Hey, May 12 is our Day. Join with Jody Smith and let’s make some noise …

Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.

We want their attention. We want to tell them all about us and we have a few questions of our own:

Did you know we are here? Did you know this day belongs to this chronically ill community?

Do you know what it’s like for the sickest of us to get through a day? They can’t speak for themselves, they have no strength, so we their brothers and sisters speak for them.

Does the rest of the world not know that the sickest of our sick can’t lift their heads? That they are in darkened rooms away from all sound because they can’t handle light and noise? That their breathing is challenged, their ability to eat is impaired, their cognitive tools have slipped to a dangerous degree? That many of them would never survive without help?

Does the rest of the world know that the poorest of our sick don’t have enough to eat? Need supplements, treatments, medical help that never come? That they are losing their teeth because they can’t afford a dentist and can’t get to one if they had the money?

That some of our sickest live outside? Some because they can’t afford a place to live and some because indoor pollutants can make their illness worse.

Our goal is to make these shocking facts known to as many people as we can reach. We want to paint the picture of suffering in such a way that no one can avert their gaze.

Most of the world doesn’t know any of this.

But they will. Because our champions will continue to put political and social pressure where it’s needed. Because the handful of researchers, doctors and scientists who care are increasing the data and the credibility of this disease. And because we will continue to paper the internet till they can’t help but see us.

I had never heard that May 12 was our day until six years ago when I came back online after many years of sickness-induced absence. And the only reason I heard about it then was because I had found my way to Phoenix Rising’s forums.

I learned then that Thomas Hennessey had kicked off this May 12 thing the same year I had gotten sick, in 1992. Despite the best efforts of Mr. Hennessey, and of all those with ME/CFS and the people who love us, with all the blogging and forums posting and social media postings, our beloved May 12 seemed to be something of a well-kept secret for years.

I can’t say we’re a lot more visible to the rest of the world now than we were six years ago, but there have been some advances.

We have more doctors and scientists who are intrigued by our illness, shocked by our (non)treatment by the medical community at large. There are more articles about us, more research about us these days than I’ve ever seen before.

Is it a drop in the bucket? Yes.

Is it more than we thought we’d ever see? For some of us, I think this is the case.

Are we happy to see it? You bet.

We are not exactly papering the internet yet but we are working on it. We are showing up more often in mainstream media. They very often don’t get the facts straight but we appreciate the attempts, and we must acknowledge that through no fault of our own, the facts can be astonishingly difficult to get ahold of and get a good grip on.

We can be encouraged and gratified that there are more events in more places around the world for our May 12 than there were in the past. There are city halls and landmarks in various countries that are lighting up the night with our signature blue lights.

Speakers will be talking about us around the world. Events will be held in our honour.

Blogs by people with ME/CFS abound, telling individual stories and sharing individual struggles. Forums swell with posts about the importance of bringing attention to those who have been dismissed, overlooked, disdained and discounted. Here and in assorted social media is where we are able to support each other, nurture and encourage and care for each other.

Writers of every sort are bent on unveiling the invisible ill to the rest of the world, throwing back the curtain to bring light to the overwhelming challenges of ME/CFS.

Can you hear us?

Maybe not yet. But you will.

Further reading about May 12 Events: