Spoonseeker blog: The Hidden Burden of M.E.

[AndyPR]

A couple of days ago, on Severe M.E. Day, I came across this post by ‘Terry’ (pseudonym) on an M.E.-related Facebook group:


I’m starting to write this at 4 o’clock in the morning. I have sleep reversal, and today, August 8th, is Severe M.E Understanding and Remembrance Day.

2 nights ago, seeking support, I posted under the title “Injured” that I had damaged my ribs, asking if anyone would be awake late, very late.
People were lovely and kind, some offering a number of solutions.

What the responses made me realise, however, is that I hadn’t done a very good job of explaining the severity of my condition generally. In fact, in crisis due to the injury, I hadn’t been able to explain anything at all.

When I joined the group, I never introduced myself and didn’t explain that I have a profoundly severe case of M.E. So, it feels a little bit like it might if one was gay and not ‘out’. Everybody’s assuming how I identify and offering solutions based on that mindset.
So, in honour of inclusivity and Severe M.E Understanding and Remembrance Day, I’m coming out, but just a little to save on your patience:

More at https://spoonseeker.com/2017/08/10/the-hidden-burden-of-m-e/