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Where ME/CFS, BLM and COVID Meet

Where ME/CFS, BLM and COVID Meet
by Jody Smith

Lots of restrictions hamper us who live with ME/CFS. Yet many of us long to be able to take action during this heightened era of the Black Lives Matter movement. Things are further complicated by the fact that this is happening smack in the middle of the COVID-19 pandemic.

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At first glance BLM and COVID may not seem connected but they are. I can't identify the underlying dynamics of this surprising partnership. That is for the philosophers, the politicos and sociologists to decipher for us. But one thing is certain — they are both all over the world. Both are sweeping the planet.

And then there's ME/ CFS ... This is an acronym that REALLY won't seem connected to the other two. At least not for the normally healthy world who really didn't notice us before. Despite the fact that we with ME/CFS are a minority and a largely invisible and unnoticed one, there are more of us than you might realize.

And while we are a diverse group, spread out around the globe and tenuously joined by our Internet connections, and while each of us lives in a place with its own individual COVID stamp of regulations and statistics ... it's surprising how similar the experiences of we who are ill really are.

And I'll tell you this, what we are living through and living with is very different from the experience of the normally healthy world.

The people who are most ill with ME/CFS are suffering even more than before COVID. Of course. They are always hit hardest and in the cruelest of ways.

Lots of us are housebound, and many are bed-bound. Some of us have no Internet and/or no physical or cognitive capacity to be able to use it if we did. Some of us live in the silent dark because our brains and bodies can't handle anything more. Woe betide this group, who may or may not have caregivers that can stay with them.

Some of these severely ill cannot get the food they need because the normally healthy are jamming up the online grocery orders. Or the people who usually deliver their food and medications are no longer able or allowed to see them.

Some can't get the online grocery service they used to because they don't qualify as disabled, believe it or not. They don't have any of the diseases on the accepted list. And yes, I have talked to someone facing this plight.

Some have nobody to take care of them now because of COVID-19. They need help desperately. But they can't get it. Yet one more situation where this is the story for those with severe ME/CFS.

Oddly, for me life is not much different in the time of COVID than it was before. I am one of the lucky ones, who is able to live a quiet but relatively stable life. There are three of us in my home, each somewhat disabled, but between the three of us we can take care of most things.

The isolation that is making many of the normally healthy people freak out is something we've lived with off and on for years. We don't like it either, but we know how to do it.

While COVID has turned life itself upside down, the Black Lives Matter movement has exploded globally as well.Yet more atrocities against people of colour have taken place in the United States, and the whole planet has gone ballistic.

Those of us who live with ME/CFS are mostly, perforce, sidelined and unable to take up placards or stand with the persecuted. Some physically are unable to participate.

And then there are those of us who must stand back because we are also caregivers, protecting our own fragile loved ones from COVID because this new coronavirus could do God knows what to their already precarious health.

Events have taken place in my life and my small Canadian town lately that have changed things for me though. I have not gone anywhere around anyone but my family for several months. Well. One time I went to the bank. Before that, it had been another month. I certainly had no thought of going out to a BLM protest. Instead, I guess you could say one came to me on June 7, 2020.

I had just that week taken on the editorship of a new hometown online newspaper. Lots to do on the Net, plenty of people interested in writing, some with suggestions of topics to cover, and one in particular stood out. There was to be an event the organizers called a 6-Foot Sit-in in the center of my town, in the middle of a Sunday afternoon.

My new newspaper announced the coming event and spread the news, and we found a reporter and photographer who was eager to cover it. This was the maiden voyage for both of them in working for the newspaper but they were undaunted and did us all proud with their stories and photos.

I couldn't go out into the peaceful protest. But I could sit in my living room 10 minutes away, posting photos, editing copy, posting stories, crediting our reporter and photographer, the organizers, the people who poured out into our downtown in droves, with masks, and placards and signs of support.

There were safety protocols in place because it's not just BLM, it's BLM in the days of COVID and man! that makes things even more complicated.

Our news coverage, from a publication that had only been on Facebook for a couple of weeks while we built a website, which had not been in business long enough to have covered any other story before, who'd never sent out -- or even had! -- a photographer or a reporter before, reached thousands of people.

The response was huge and astonishing. And for me it was a reminder of something I had forgotten. That a person with a chronic case of ME/CFS, who rarely leaves the house, but who has an internet connection, can still have a voice, and help to lift up the voice of others.

How is COVID affecting you?

- Image by Patrick Behn from Pixabay
 
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I love your story! Thank you so much for writing. It can be hard to know how to help from home when activities of daily living are so challenging. It's very inspiring to remember there's plenty of work to go around and many ways we can take part in this moment.