Posted by Heidi/Mermie For example I am currently forced to live with a family member that chooses to ignore the reality of my illness and who causes around a third of my relapses (loud sound causes me excruciating seizures and severe heart/breathing problems that often persist for days afterward) as well as seeming to enjoy shouting abuse at me, telling me that I am so worthless I should kill myself, or that I should drop the act and stop 'pretending' to be so sick. Or laughing at me as I struggle to remember how to walk. There is no way he would think he could get away with such behaviour if I had Multiple Sclerosis rather than ME/ICD-CFS. But then again maybe he would, some people just like to pick on those less able to defend themselves. As one man with ME/ICD-CFS writes: In spite of ample evidence to the contrary, some people will simply prefer to believe that [ME/ICD-CFS] and other disabilities are nothing more than depression and hysteria. In my own opinion, such people find that it serves their own purposes better to think that way. They are mere opportunists. I'm not sure that the people around me would let him get away with it so easily if I had Multiple Sclerosis though and that's what really infuriates me. The name of my illness shouldn't mean I don't deserve basic respect from those around me, but often it seems like it does. Abuse and neglect from doctors, nurses and carers is also very common. This is an excerpt from the Alison Hunter Memorial website - set up after she died from complications of ME/ICD-CFS Nurses walked past her bed, ignoring her in favour of those with readily defined diseases. Six weeks before her death, a new specialist suspected Alison might have the complex immune syndrome Behcet's disease. With a legitimate label, the establishment became accepting of Alison, and even kind. "It was almost too cruel," says her mother, "to see her treated as she should have been all along." But Behcet's was never confirmed and by then Alison was so very ill. In the end, heart damage, massive ulceration to her throat, failure of her gut and bowel and horrendous neurological symptoms, conspired to defeat her. James Isbister, the head of haematology at Royal North Shore Hospital, treated Alison when she was a child and again when her illness returned in her teens. . . "To be honest I felt helpless towards the end," Isbister says. "On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of the terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me." Alison, he said, was, "like someone going through a concentration camp" - suffering terrible physical distress compounded by insults and inhumanity." But it is the children with ME/ICD-CFS and their families who perhaps pay the highest price for the ignorance about this illness. Because it is harder to pin the blame for the illness on depression or anxiety with children, the parents are often blamed instead. Parents of these ill children have been charged with neglect or accused of actually making their children ill themselves. Some parents have lost custody and their children have been placed in foster care. All of this while the child continues to be seriously ill and not receive any sort of appropriate medical care. There are also other serious problems for the child: Misdiagnosing [ME/ICD-CFS] as school phobia, depression, or separation anxiety or chalking it up to family problems places the blame squarely on the shoulders of he child. When adults experience this kind of scepticism, they usually are able to defend themselves against the mistaken ideas of others. Children are unable to do so; they depend on adults for information, explanations, sympathy and advice. To throw disbelief in the face of a child who not only has all the symptoms of [ME/ICD-CFS] but is terribly frightened and in profound need of reassurance is not only cruel, it is detrimental to the child's future emotional growth. ( As one author writes, 'The real losers in this blame game are the children. . . The focus [has shifted] away from the arduous and tedious work of making children well again. Let's get on with it.' However inconvenient or scary it may be, ME/ICD-CFS is a devastatingly severe physical illness with no cure, and countless sufferers who have had to put up with not only being severely ill but with abuse and social disbelief about their condition as well as an almost total lack of support. It has to stop. As one ME/ICD-CFS sufferer asks: "stand up for me when I'm not around. You will probably have more credibility than I do. Spread the word about [ME/ICD-CFS]. . . Talk about the crying need for support services similar to those offered by the AIDS networks in our communities. Stop others from blaming the victims. When you hear charges that I am exaggerating my symptoms set the record straight. The symptoms that show, the ones that I talk about, are just the tip of an iceberg." wellnesstrainresearchgroup!M!
on 8/27/2007, 4:23 am
The negative attitude to people with ME/ICD-CFS can also lead to abuse.
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