Getting help when you have M.E. is not easy. In fact, people from all around the world affirm is can be nigh impossible to access any kind of help; and what assistence/treatment some (all too few) receive tends to be very little, inadequate, sporadic, and often harmful. And not worth the effort it took to get.
M.E. has been around a long time. There’s a school of thought that Florence Nightingale suffered from it, & there’s evidence of people having it ages before then. It was given several names by different physicians. Historically M.E. patients have suffered misdiagnosis, mistreatment & disbelief as well.
Several epidemics have been reported, each time accompanied by controversy…especially from psychiatrists who have used labels such as mass hysteria & hyperchondriacs & accusations the victims were faking the symptoms…yet on each occassion experienced doctors struggling to treat their patients refute these assumptions. They are the ones, on the spot, who saw and measured the fevers, the sweats, the fluctuating blood pressures, and the many other symptoms.
The story can be read at: www.name-us.org and www.meactionuk.org.uk There are other sites you can look too. You’ll also learn more about the illness itself, the symptoms, the theories…and the politics surrounding it (be warned, you will be appalled at this last)
Anyhow, the thing is…not only is Myalgic Encephalomyelitis not understood even by doctors who know it is a physical illness caused by a virus…it is frequently dismissed as not real or a form of neurosis or depression or other mental illness…or simply are too busy with easily “treatable” problems so toss M.E. AND the patient into the too hard basket. Or push patients into treatments that have little chance of helping and oftentimes makes things worse. Incidence of abuse is high.
Taking their lead from medical practitioners, so too do nurses & other health workers join in mishandling, mistreating, demoralising and other abuse. As with the doctor, the only time you will get any empathy at all from a nurse is if she either has or knows someone close to her who has M.E. or cfs or Fibro. Once they have experienced in their own lives the effects of the disease , they will then take you seriously, albeit they first glance over their shoulder to make sure no one else is listening.
This is true with disability support workers…whose role is to provide supports, services, aids & equipment to their clientele. The same prejudice they evince towards the mentally ill is in full display with M.E. clients…if you’re fortunate to be accepted as a client at all. It will be a full-on battle to obtain their assistence for the most minimal services. And what you CAN get them to arrange will be on conditions impossible to meet & totally inadequate.
eg: The Homehelp worker they arrange will, possibly, vacuum the floor but dusting, dish washing etc will be labelled do-able for you and part of your rehabilitation…despite no actual rehab being on your doctor’s agenda. The wheelchair you desparately need is not forthcoming as there is someone with REAL disability who needs it more. On & on…a battle you are too ill to fight.
And it seems of prime importance to undermine you in the eyes of your family and friends. They will be sure to be told you aren’t really sick, it’s all in your head, don’t pander to the neurosis…and you end up alone (at best) or confronted by disbelief , denigration, emotional & physical abuse. “You’re not trying hard enough” “You are lazy” etc.
Little wonder so many people with M.E. end up taking their own lives out of despair. Even the strongest person will buckle under this impossible immovable wall.