This is a small preview of kind of what I’ve been thinking about the last couple of weeks. For the first time, I actually reached out and asked for some moral support. I was embarrassed, as I’m usually the one helping others but it went well and I got the help I needed. I guess there’s a lesson there.
We have received the following message from a woman who wishes to remain anonymous:
“Apologies for the very long message but I am at the end of my tether with my GP, who whilst a nice and caring woman is just completely stuck on the belief that my CFS/ME is functional i.e. psychological.
I’ve tried everything. I’ve written letters (both short and lengthy), I got her a copy of the M.E Association’s purple book, I’ve pointed her to Unrest and What about M.E., I’ve tried speaking to her on the phone and most recently, I went in person to discuss my severely limited life for around 40 mins (during which I again tried to address her disbelief that this is a complex multi system neuro immune disease). And although she tried to be nice about it, she persisted with the functional aspect, directing me to a website called neurosymptoms.org which seemed to have almost every symptom you could think of, including my several ones. It even spoke about how we patients get ‘offended’ at the suggestion that our illness not biological in nature.
She asked me why it matters to me that the illness not be psychosomatic, basically challenging my ego I guess and I couldn’t get across to her that it’s because it affects the way I’m treated (or rather not treated) but she just smiled and nodded and patronised me in that way that they do.
It made me cry, again. I feel like a lunatic like she might be right and I’m just delusional somehow. That M.E. exists for others but not for me, that I’m one of the misdiagnosed ones that has mental health issues and no pathology. I’m angry and upset at the same time and I feel like giving up on getting anyone to listen.
This happened a couple weeks ago now and I’m only just in a place to try to process it. The self doubt is high and, well I’m lost. Can anyone help me put my thoughts/reactions in order?”