I’ve been trying for weeks to write something for Severe M.E. Awareness Day which is tomorrow.
Severe M.E. Awareness Day is on the 8th August as it was Sophia Mirza’s birthday. Sophia died in 2005, and is said to be the first patient in the UK to have M.E. listed as the cause of death. In my reality short time of having M.E. too many people have died. Merryn Crofts (whose cause of death is also listed as M.E. just as Sophia’s was), our friend Alain, and Jennifer Chittick are the names that spring to my mind. Yesterday we heard that Michaela Lex passed away. Just one is too many.
No form of M.E. is easy and no person with M.E. is lucky, but Severe and Very Severe M.E. are a level of disability and suffering that rightly needs its own day of recognition and awareness.
The thing with Severe M.E. is that more often than not, the people suffering are too unwell to be here with us online. They are too unwell to speak for themselves or represent themselves. And so I feel we all have a duty to never allow them to be forgotten. They might be out of sight but they must never be out of mind.
I had Severe M.E. and it was the hardest time of my life.
Looking back to those years is just so hard to do. Knowing some of my friends are still affected that severely, and far more severely, is heartbreaking.
I’m not recovered, I’ve just seen improvement since 2014.
It’s hard to talk about for many reasons, one being that people automatically assume I am no longer ill. And to have to correct them on that becomes disheartening and tiresome. Truth is, seeing progress after having Severe M.E. still means you are disabled in ways others couldn’t imagine.
Severe M.E. is THAT debilitating that progress still means you are worlds away from living independently, working, showering regularly or independently, walking any further than a few metres…in my case anyway.
I sometimes gaslight myself that it can’t have been that bad; that it wasn’t that bad. But my goodness it really, really was. The heartbreaking reality of Severe M.E. and the neglect that comes with it.