Lucy Pevensie is a character of the C.S,Lewis Narnia books. In the first book, The Lion, The Witch and the Wardrobe, Lucy has returned from Narnia and tells her siblings about it. They disbelieve her. Then Edmund visits Narnia too but denies it while Lucy is faced by a wall of disbelief and runs away crying.
The old Professor of the house asks the older two Peter and Susan, who is most likely to tell the truth, Lucy or Edmund. He then suggests that even if her story seems unlikely at first they should believe her.
ME/CFS and fibromyalgia are like a dark Narnia where the witch of a hideous disease has control. We explain what we are experiencing and like Lucy we are disbelieved. Many doctors behave like Edmund. They must see how sick their patients are but they want the Turkish Delight offered by bad bone idle medicine and so deny there is anything wrong.
I have been listening to lectures about more recent research into fibro and ME/CFS and something that has come up (again) is that patients not only lose their abilities, jobs and receive little care, but that they lose family and friends. People can’t be bothered to stick around someone who just doesn’t get over it. Many of us have faced the sense that doctors think we are making it up.
Dr. Stuart Drescher PhD, himself an ME/CFS patient talks of the conversation over secondary gains. Back in my nursing days we spoke of secondary gains, mainly with what my friend called “the worried well” who did not wish to get well in case they lost something of the attention and care from family members. In real life, we rarely came across patients like this, though I did personally have a patient who insisted she couldn’t get well or her son would go off and have a life. Ouch. Most patients, whether in the “worried well” camp or in the seriously mentally ill camp wanted to get better. In fact most patients lost so much that if there were any secondary gains (and there rarely were) they were drowned out by the sheer number of losses in life, not to mention the guilt they carried for the impact their illness was having on others.
The same goes for any serious long term illness. We lose so much. We lose our jobs, we lose our basic abilities. Many of us find standing up bloomin’difficult. We can’t do so many of the things we used to do any more. We lose a lot of dignity as we struggle to keep going. Some of us have the indignity and gross inconvenience of having to use a wheelchair. (I am grateful for my wheelchair because it means I’m not housebound, but the world is not designed for wheelchairs – ask any mother with a buggy).
I wonder if doctors really are as innocent as Peter and Susan when they refuse to believe patients or whether (as I’m afraid I suspect) they are really a bunch of Edmunds who know very well how very ill people with ME and Fibro are but they just don’t want to be bothered to deal with the shambolic and complicated disease, particularly when it might not be politically expedient. When those who have been the most obstructionist in allowing research and care for people with ME/Cfs, veterans with what has been called Gulf War Syndrome and for some reason dragging those with fibro into the dark, get knighthoods, it’s hardly surprising that medics feel the pull of politics over “do no harm” in medicine. (Coupled with something like and OBE for a medic who performs abortions, we can see how those who push the’ life unworthy of life or care are politically lauded).
How many family members who have walked away do so because they believe the person with the chronic illness is making it up, or because they just don’t want to bother with it?
A friend of mine was talking about how she thinks she is “hard” and that people won’t ask her for help, even when she would be willing to support them. In fact, as I pointed out to her, she is one of the most supportive friends I have.(I have other very supportive friends too) She sees me very regularly, so if anyone was going to get sick to death of my illness it might be her, but she doesn’t. She doesn’t over dramatise it, and whisper behind her hands about it, but nor is she dismissive. I don’t have to think like a performing seal when she’s around. She just accepts that I’m a bit bust and even jokes with me about my weird and less than wonderful symptoms. I love that.
We aren’t lying. We aren’t making it out to be worse than it is. We aren’t nearly as stupid as we look. And we don’t balance balls on our noses – not even in a Rombergs. 😛