May 12, 2023 Is International ME/CFS Awareness Day

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by Jody Smith

This year marks 31 years since Thomas Hennessy, Jr. decided that May 12th would be our ME/CFS International Awareness Day. May 12th had been the birthday of army nurse and Red Cross founder Florence Nightingale. After the significant contributions she’d made to the world, she lived with a chronic illness for the last half century of her life.

In 1992, Hennessy decided that Florence Nightingale was the perfect historical hero for our International Awareness Day.

ME/CFS has never really been a big media draw. Even after all this time, mentions of this condition are few and far between in mainstream news. And unfortunately, not everything you read or hear about ME/CFS is accurate. Until recent years, we had few advocates and supporters.

For this reason, the people least able to afford the energy and effort to try to catch the world’s attention felt the need to step up — figuratively speaking — since “stepping up” is not always possible for people with ME/CFS.

Interesting predicament, wanting to speak out yet not be able to leave the house, or perhaps your bed. Some of our people cannot be around others, around any kind of noise or light, without suffering a cascade of devastating symptoms. Isolation and quiet desperation are standard features that tend to come with this illness. None of this is ideal for grabbing attention out there.

And then the internet changed the equation.

Criticisms and laments about the downsides of social media and the Internet are nothing new. As long as I have been involved online, I have heard and read such things. I get the points, I can see what the naysayers are warning about. But I have a different perspective. And I daresay so do many in the ME/CFS community.

The internet has become a lifeline for our community, and for so many lonely individuals.

Not all of us are online, of course. Some of us are too sick, too weak, or can’t afford the equipment to join the online ME/CFS community. I wish this were not the case for them. I wish everyone who is housebound or bedridden had the devices, the finances, the mental acuity and the ability to type that would allow them to jump in. Or fall in. Or roll in.

My life went from being a busy normal kind of life about 30 years ago, to … not. Eventually my ME/CFS symptoms became so severe and restricting that I was spending most of my time in bed, away from people, away from noises, away from the world I had previously taken for granted.

Fast forward (if someone with ME/CFS can really do that) several years, to a time when I had the means (a computer) and a sense of isolation that drove me to use it. In the early 2000s, there was a little online for people with ME/CFS. I searched the Internet for anything that might help me or explain my symptoms.

In the process I stumbled upon Cort Johnson who wrote articles about ME/CFS in terminology that even my fractured brain could (sort of) comprehend. And unlike the usual faceless tomes written in medicalese that I could not grasp, his articles had a face. There he was, a kind and friendly person who understood.

I remembered that face and that understanding person in 2009 when I was less vegetable and more cognitive, and was searching the net for human connections. I emailed Cort and was invited to check out his new forums on his website Phoenix Rising. I took him up on his invitation.

That was the beginning of a transformative period for me. And around that time, similar connections were being made online by members of our global ME/CFS community.

So much of this transformation hinged on the internet, and the efforts being made by some very ill people who would no longer tolerate being cut off from the rest of the world.

We had found hard drives, monitors and keyboards and we had had made the leap through the portal. And we found each other there. Game changer!

A proliferation of ME/CFS forums, blogs and websites have made a big difference for the average ill individual who is online. We read about each other, talked to each other, wrote some of our own stories. Felt heard, felt comforted, felt ourselves to be a part of something bigger than ourselves.

Because of the internet ME/CFS connection we can have conversations, push back the dark all-encompassing silence. We can look for answers and theories and share our experiences with others, who in turn share their experiences with us.

If you’ve never been deprived of such prosaic things for any length of time you have no idea how desolate life can be without them — and how precious and humanizing these things are.

I think sometimes about what our fragile lives with ME/CFS would be like without the internet and it makes my blood run cold. So many of our members would be alone. Even some living with their families cannot be around other people for long, and they live in their bedrooms.

If they’re sick enough they are aware only of the prison of their all-encompassing symptoms. If they are not quite that sick, the hours of a day loom long, relentlessly repeating day after day.

For many, help is nowhere to be found. If you think about it — where could help be found in such a scenario?

So many possible avenues of human assistance are cut off. People are not coming over to visit or if they are you can’t see them. People don’t know what you need. Often they give up when they see no signs of improvement after months and years.

Life falls away like beads from a broken necklace … every single day.

Finances? Don’t ask. The safety nets most people assume are in place are lacking for so many of our numbers. Can’t earn money. Can’t prove illness. Can’t afford treatments, that may or may not be effective. Misery.

Progress has been very slow for our community. But we have been seeing some advancements, in research, in advocacy, in public awareness. Now there are ME/CFS organizations, locally and globally. We have advocates, and researchers, and a few doctors who are knowledgeable and who care about what happens to us.

There have even been demonstrations — which is a huge challenge for people who can hardly function and for whom post exertional malaise (PEM) can rob them of energy and well being for days, weeks, months and years after they’ve pushed themselves too hard.

We have conferences and videos, virtual meetings and special events. People with ME/CFS are invited to send in their photos and their stories, to organizers who showcase them for the world to see. Whatever can be carried across cyberspace, somebody with ME/CFS or someone who loves us is hatching a plan.

We are often suspected of “just” being depressed or afraid to mix with the rest of the human race. I’ll concede we get depressed. Who wouldn’t? But the hallmark of people living with ME/CFS is a determination to persevere, even if that just means breathing through another day and hoping some day it will be easier.

And those of us with enough energy and functioning brain cells are doing what we can to be heard and seen. And while we wait for that day to properly arrive, we are busy holding each other up, connecting at a mad pace (by ME/CFS standards) and doing what we can to chase away the dark silence and connect.

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