In eighteen years of living with chronic illness, I’ve never explicitly been told that my many symptoms of ME (and Fibro) are “all in my head”. The truth is that after seeking help from over twenty-five doctors, some specializing in neurology, rheumatology, psychiatry, immunology, cardiology and other fields of medicine, not ONCE have I felt that I was taken seriously except for the now retired endocrinologist who diagnosed me in 2004. While some of these doctors demonstrated understanding at first, their demeanour changed over time as I showed signs that I wanted to be a partner in my health care and, most irritatingly, that I was well informed about my condition.
It turns out that the great majority of physicians don’t want their patients to be partners. I’ve often heard: “I’m the doctor here…” A statement meant to put me in my place of submission toward a knowledge greater than mine. The only problem is this: (As many patients of a long-time chronic illness like ME know full well.) When in a room with most doctors, the expert on the illness in question is the patient!
As the doctor feels less and less able to
alleviate a myriad of symptoms, and he is unable to explain why some
medications simply don’t work or why the illness is incurable, he starts to
build up his own self-esteem by knocking down that of the patient. I remember a time when I left a specialist’s
office with some sense of hope. Then, I began to work on raising awareness by
handing out published papers, articles from reputable sources and even the
film: Unrest. Some physicians showed a mild interest, and some pushed the
material back toward me. But what is evident is that the few I now see – with
less frequency – usually cut me short and show clear signs that they want me
out of their office. Some literally tell me that they have seriously ill
patients waiting while I’m talking about things they can do nothing about! “Am
I not seriously ill?” I ask. I usually
get a response that goes something like this: “Oh, I have no doubt that
you’re in pain and tired, but your tests are not that bad; I’m not worried, try
to relax and think about something else besides your illness.”
At this point, I leave because I feel totally defeated and beyond angry. As I
slowly walk to the car, I think: I now know that my brain is inflamed,
damaged and misfiring continuous pain signals. Yes, doctor, it IS all in my
head!
Recent studies are demonstrating the science at the root of this statement. There is no doubt today that the brain of patients with ME shows damaged areas. There is no excuse for doctors to dismiss us based on their refusal to do a bit of reading to educate themselves. This is unacceptable. Treating a person like an annoyance because they don’t know how to help them is not practicing medicine, it’s practicing ignorance that causes millions of people, years of unspeakable misery. What happened to: First do no harm?
ME is recognized worldwide as a neuro-inflammatory disease that is as serious as MS, Polio, Cancer and AIDS. Look – it – up!!!
Almost every day, I read in support groups, about a person with a serious chronic illness being told: “It’s all in your head” before being sent home with anti-depressants. It is so disheartening for anyone to encounter such nonsense. But now that I think of it, is it nonsense? NO.
The nonsense is the ignorance and the judgmental lack of care that ensues. If they are to do their job, our doctors need to seriously open their mind to the fact that when it comes to neuro-inflammatory illness, it really IS all in our head!
See you on the path of healing and beyond,
Marianne
Image: Gordon Johnson / Pixabay
Dragon Tamers 