Post Thirty Four. Planning For A Future With Severe ME.

Caminage

 

By Pheobe Boag in Puffins, Penguins and Me.

 

It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as a result. I then found that the longer I spent away from my blog, the less motivated I felt to get back into it. However, I have recently been following a discussion in one of my ME support groups, it got me thinking, and it inspired me to write this post.

The discussion was about what information/advice we should share with people who are newly diagnosed with ME, which I have shared this at the end of the post. I was especially interested in what we should tell them about the likelihood of recovery.

Should we warn them that if/once they reach the five year mark, recovery is statistically unlikely? Or is that too harsh for someone who is newly diagnosed? Should we never tell anyone that recovery is unlikely? Is keeping hope alive more important than facing the truth? Does belief affect neurology? By telling someone newly diagnosed that they may never recover, are we setting them on a course of certain non-recovery? Or, is it possible to face reality, accept that recovery may not happen, but still retain hope that it could?

 

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Link to Severe ME story

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