Doctors throw around all sorts of theories about why you have symptoms.
"You're fat." I was 5'7", 125 pounds when I got sick. The bottom number on the weight chart for my height was 135, so I was definitely NOT fat ... I was underweight.
"You're menopausal." OR "It's just normal aging." I was 28 when I got the virus that resulted in CFS. I was neither menopausal nor middle-aged.
"You need to exercise more." I was exercising every day when I got sick, and walking at least an hour a day when I relapsed. How much more exercise do they think a woman with a full-time job has time for?
"You're out of shape." I double-dare any of the doctors who came up with this theory to lift more weight proportionally than I was able to lift. I could (and did) lift/carry people who weighed twice as much as I did, and did it without breaking a sweat.
If you're married, you "resent your husband making you work", but if you're not married, the cure is to get married.
"You're lazy." Excuuuuuuuuuuse me? Someone who has had 2-3 jobs most of her life is not lazy. The lazy one is the doctor who can't be bothered to investigate further when the basic first-round blood tests come back normal. In fact, neither CFS nor fibromyalgia will show up on blood tests for diabetes, anemia, etc. There are tests that will show abnormalities, but they're not among the tests that are routinely done in a basic exam.
"It's all in your head." A 105 fever was not "in my head". One of the fundamentals of hypochondria is that no one knows you're sick until you tell them. I had symptoms that other people could see for themselves. When I dragged myself back to work because I needed the money, my co-workers commented that I looked like hell. For some reason, everyone EXCEPT the doctor could see these symptoms.
"Secondary gain." Well, maybe if you have a doting husband who will take a second job to pay the bills and hire a maid so you can avoid your responsibilities around the house. I don't have one of those. No one takes care of me except me. If I don't work, there's no money (and SSDI, if/when I get it, is not enough to pay the bills, much less to hire a weekly maid service). Being sick costs me far more than I'm getting in return -- since my Unemployment ran out in summer 2000, I have received not one cent of government benefits. No one does my chores unless I pay them. It's costing me tens of thousands of dollars every year in lost income, paying for medical insurance that would otherwise be provided by an employer, etc. And my most recent SSA statement shows that my retirement benefits are already down by $200 a month because I haven't been contributing at the level that I did when I was working full-time. There is absolutely no gain in this for me, only losses.
And then, the ever popular "depression" diagnosis, regardless of whether the patient has any of the emotional requirements to justify that diagnosis. People with psych training keep sending me back to the doctor with the observation that I don't have any of the emotional components required: the symptoms I have are those of physical illness, it sounds like flu to the psych expert.
The doctors ignore the psych experts, because they don't want to hear that the ball is back in their court. That would require them to take the time to sit down and figure out what's really wrong. Or admit that they don't know everything and call in a specialist. Early on, I got the name of a specialist in my medical group who said he could help me; under medical group policy, I needed a written referral from my doctor, who refused to give it to me.
The problem is not the patients. The problem is the doctors who are unfamiliar with the research, and expect the patients to get better from treatments that have been proven useless.
With both CFS and fibro, there is plenty of research showing biological abnormalities. It is irresponsible and slanderous for anyone to say "it's not real". That proves their ignorance to those who know the facts. The problem is, too many people don't know the facts, and will rely on articles like this one in forming their opinions. "If the Times says it, it must be true." That ensures even more discrimination against the disabled.
Maybe some people are jealous that they have to work and I have all this free time. But I can guarantee you, if they had to live under the same conditions I do, they would choose to go back to even the worst job, rather than endure the non-stop pain, the poverty, the loss of independence, the verbal abuse... My "free time" is taken up with doing chores, which now take at least twice as long because I have to move slowly, and require at least twice as much time to rest (e.g., doing half an hour of housework means an additional hour lying down, sometimes more, plus half an hour soaking in a hot bath to ease the pain enough that I can stand to lie down with my whole body in contact with the bed or couch).
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