I'm wondering how much quality of life it is possible to have with severe and particularly very severe ME.
If you visit severe ME online support groups you will see a lot of people needing support for feelings of desperation and despair. You will find people who are lonely and who are suffering deeply from both the affects of symptoms and also the social and emotional effects of this illness; but is it possible to have true quality of life with severe ME? Is it possible to be happy?
A large part of awareness campaigns centre around how awful it feels to have this condition. I don't think that's always helpful. I think it is definitely useful to do that to an extent when pointing to the medical and social care abuse we suffer but, does it hinder our acceptance as a community? People with various other conditions can have pride in their conditions so why can't we? Is it truly just down to suffering?
When I had severe (rather than 'very severe') ME, I definitely had some quality of life and was often happy. I knew that I could find happiness even if I stayed at that level forever. Most of why I desperately saught improvement was to gain back the ability to play my trumpet. I could deal with most other things. Now that I am more severe, I dont know if I could live at this level and be happy - but it's so hard to judge when there are so many external factors affecting my quality of life. With this level of physical suffering maybe I could have a decent quality of life. Maybe it's the mental suffering from social services and lack of medical support that is truly affecting my quality of life. Question is, with an illness so deeply entangled in medical and social abuse and neglect, can we even consider the illness in isolation? I think truly what makes ME so awful is the combination of how the condition affects us and how we are treated.
When we talk of the elusive 'hope'; what are we hoping for? A removal of symptoms or an end to the abuse?
