I have read this well presented view of the horrible stigma that comes with a diagnoses of ME/cfs. If you know someone with ME this is the article to read. It’s long but worth the effort.
There should be no stigma attached to being ill, but we live in weird times where one illness, which might get media attention, means compassion and another which gets negative media attention is treated with contempt and of course that means those who have the illness are treated with contempt.
Schmid gives a list of possible reasons for the stigma attached to ME. The first one she notes is “symptoms come and go.” There are plenty of other diseases in which symptoms fluctuate so people who use this excuse to hang their meanness on are on thin ice. Even cancer patients going through chemo have good days and bad days.
There are so many symptoms; this is simply because the disease is system wide. The sad fact is that the way modern medicine has moved means that a patient needs to have one or two very obvious symptoms that show up, preferably, on a simple blood test or at most an x-ray and can be treated by one of the astonishingly narrow specialists.
A patient with a system wide disease that it attacking just about every part of his or her body is just too difficult for these doctors to cope with. The huge emphasis on holistic care and multidisciplinary working that I was trained in back in the 1980s was ditched almost before I qualified in favour of some kind of bizarre market model where the cheaper the disease the better.
Some of the symptoms are bizarre (writes Schmid) and this is certainly true. Some of my most bizarre symptoms I have never even mentioned to a doctor. As Schmid points out most of the bizarre end of things come from disruption of the nervous system, but neurologists don’t seem to have a clue about them. She writes about Floyd Skoot’s “Xerox machine” default word. Most of us have this. In my case it’s “dishwasher” or more recently “wishdosher”.
Despite the noted deaths from heart attacks due to heart failure and the shocking number of suicides, those with the disease are still treated quite simply rudely and even cruelly by most doctors.
She goes on to speak on how medics need educating about the nature and seriousness of the disease. All that is true. But I still want to know WHY this disease, more than any other, gets such appalling treatment.
I read Osler’s Web and although Ms Johnson gave a solid and well researched testimony about the politics and shenanegans that began with the Tahoe Incline Village in America outbreak in 184-5 but when we know that it wasn’t just Cheney and Peterson who were asking the CDC to come and investigate. Dr David Bell says he did and they refused and then he discovered another doctor with a similar cluster outbreak who couldn’t get the CDC to respond either.
WHY wouldn’t they? Something made them determined not to investigate right at the beginning, before anyone from the CDC had met any patients at all.
The debacle soon spread over here and the comedy duo Wessley and White labelled it with a fake psychiatric label. While this has certainly feathered their nests and got them in with the elite crowd, I still can’t see why this has been enabled?
There are quite a few diseases out there that have a stigma attached. Ask anyone with Schizophrenia how the world and it’s dog treat them. But I have never before come across such a serious disease, where the stigma is rooted in so much spite.
And of course lies.
Doctors have always been willing to shove the truth under the carpet, but to tell a bare faced lie; I think that seems to be a speciality wih ME patients. I think the very worst lie I was told, was by the neuro who saw me at the beginning of all this who categorically insisted I would get better within a few months.
When I began to go into a remission for the first time I really believed that this was it and I would be well and back to normal soon. When I crashed again I was confused and when it happened another couple of times I was devastated. Yet no neuro went back on that lie. They just repeated it.
Now that I have done the research and I know what fibro, ME and dysautonomia can and does do I am much stronger and able to cope with what it does do. No one deserves to be lied to about how their chronic illness is going to go.