CW: death, suicide, deaths within the community
How do we show up for our even-poorlier friends when our hearts break for them? When we know it could happen to us? One virus. One stressful occurrence. Often without so much as a noticeable trigger.
The lions’ share of the workload always falls on us patients, but within this patient community, there are some of us who have more ability than others. That is not to say we don’t also live lives affected and devastated by M.E., but that we are in a place, circumstance, or situation that is less debilitating than others’.
The sadness can be paralysing, and I have to protect myself and my own health. But I have far more capacity than some of my friends do, and further than that, there is a whole unseen, disconnected community of people too unwell to make their existence known to us here. So, to a certain degree, I must speak. We must.
People die from Severe M.E. (Last time I said that I had people disagree with me. They could see no other experience than their own.) It’s a gut wrenching truth to be faced with, but we must face it. People die from Severe M.E. (Death by suicide can happen at any severity, but I am not referring to suicide here.)
Those who do not die, and there are many, do not live either. M.E. exists on a spectrum, and within the Severe category, there are vast variations. It in no way undermines or invalidates my own experiences of Severe M.E. to say that I was not at the most debilitating end of that spectrum. It was hell. But there is worse.
I have certain friends who I live in fear of losing to this illness. Their bodies are so frail and fragile. They cannot sit up. They cannot chew, or digest food. They cannot be touched. They cannot be cared for in the conventional ways. Some cannot speak, or communicate.
There are families enduring *this* alongside their loved ones. Knowing that, behind the closed door they can rarely risk opening, their child is suffering beyond belief. My own family knows that there is no support in those situations. The stigma of M.E. rages on in 2026.
So what can we do for them? Here in our impenetrable echo chamber, what can we really do? It is heartbreaking for us to witness, whilst knowing it is only, truly, luck that stands between us and them. But we must witness it, when our own circumstances allow. Often it is all we can do; to not allow them to be unseen and forgotten.
Severe M.E. Awareness Day is 8th August. In memory of Sophia Mirza, who died the first recorded death of M.E.
'M.E. myself and I' by Anna 