By Jody Smith
Every year we who are able do our bit to bring greater awareness to the plight of the most severely ill 25% in the ME/CFS community. Does this bring greater awareness to anyone outside of our community? I wish I knew. But we carry on in this endeavour because these precious people matter to us and we want them to matter to the rest of the world too.
August 8th is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis. It’s a day that is intended to bring attention to those who are most invisible in our ME/CFS community. It is a time when we remember and honour those who have passed away without cure or respite, and those who continue to live in the dark and silence.
It would only make sense that those of us who are not so ill are the faces you might see, and the voices you might hear. It is our stories that you might read. And upon reading, you might think that our circumstances don’t sound all that bad.
Everybody gets tired right? Everybody has some restrictions that pinch them. But how bad could it be? After all, we are (more or less) ambulatory, we’re apparently able to type and our cognitive dysfunction doesn’t seem to keep us from complaining and moaning all over the Internet. This perhaps makes it harder for the healthy world to see beyond us into the darkened rooms of our most severely ill 25%.
The irony of it all is that the people who are sickest with ME/CFS are nowhere to be seen. They are too ill to be able to come out of shuttered and silent rooms. They may not be able to stand or even sit up. Just being moved by a caregiver from one room to another or out of doors can cause intense consequences.
You cannot listen to what they have to say. You will not hear about how they feel. You won’t see what they go through.
Because they are locked away, to protect their fragile spark from being further quenched by too much stimulation, by cognitive dysfunction, digestive maladies, muscle weakness, dysregulated blood pressure, neurasthenia, visual disturbance, vertigo, orthostatic intolerance, POTS and a host of other issues.
They may lie shivering on the floor because they cannot bear their coverings or clothing, cannot tolerate their mattresses … or maybe don’t have any.
Does this sound too extreme to be real? It is actually much worse than most people can imagine.
On the rare occasion that you become aware of someone who has ME/CFS rest assured they are not among the most severe 25% for all the reasons I have laid out here.
The fact that I can write a sentence that I can have published for you to read tells you that I am not one of the 25% and fortunately for me, I never have been.
So I am here to tell you the story of how the Day of Understanding and Remembrance came into being. It was conceived by a group of people who felt compelled to be the voice for those without a voice. And it was put into action after yet one more innocent had died of ME/CFS.
Sophia Mirza had suffered from severe ME/CFS. She had been treated abominably by the medical community that was supposed to help her. Instead of receiving treatment for her physical condition she was forced into a psychiatric facility where she eventually died at the too-young age of 32 riddled by symptoms of ME/CFS.
Sophia’s birthday was August 8th. When Severe ME Awareness Day was created by the 25 Percent ME Group in 2013, they chose her birthday to highlight the needs of this special group in our ME/CFS community.
I had been pretty non-functional, physically and cognitively, sometimes for years at a time. I can tell you it was pretty awful. A miserable bleak and horrifying way to live. And the most severe 25% are living with something even worse.
I can’t fathom it, even after where I have been for years at a time. A healthy person would have absolutely no frame of reference for that existence.
And that is why I write an article like this. Because when someone is forced to endure something so ruinous, so life-destroying, other people should know about it. And if the afflicted person is not able to communicate what they are going through then those who care must rise up as their advocates and do it for them.
Remember our most precious, and our most ill on August 8. Please, remember them every day.
Photo by Ivan Oboleninov from Pexels