Monday, June 9, 2014

"Why does stigma still surround ME?"

Start: "Why does stigma still surround ME? Because doctors believe it's all
about deconditioning"

"Almost nobody, except a tabloid headline-writer, says ME is "all in the
mind" these days. So why is there still such a stigma attached to
ME/Chronic Fatigue Syndrome?
In my experience, the stigma gets  worse the more severely affected with ME
you are. Now that my illness presents in a moderate form, the treatment I
get from the medical profession is mostly benign neglect. When I was very
severely affected it was a different story: I experienced outright
hostility, open disbelief, accusations of hysteria, attention seeking,
malingering and manipulation. I was very, very ill and yet my poor parents
were shunned by doctors and left to care for me alone."
It ends:
"To end the stigma of ME and the shocking neglect and even abuse towards
severe ME we have to knock the deconditioning theory on the head once and
for all. We need to change the received wisdom on ME within the medical
profession. It won't be easy but it looks like at last we science on our
----  i.e.



Perceive yourself stigmatized, and stigma will follow.

My illness, NON HIV AIDS, has no stigma. I get treated with nothing but care, love, support, concern, and inquiry.

CFS Facts said...

I'll dispute that. When someone came up with the name CFIDS, that included the immune dysfunction aspect, I used it a couple of times till I realized that people ran the other way. IDS sounded like AIDS, and they didn't want to catch AIDS from being around me.

At least with CFS they'd stick around to talk to me because I didn't sound like I was contagious with a fatal disease.