is it real? does it matter?

Today I stumbled upon this article from January in the Times: Drug Approved. Is Disease Real?

There are a couple of things going on in this article that are really interesting. The first is a basic question that doesn’t have a basic answer: Is fibromyalgia real? Even as someone who has been diagnosed, I still don’t know. The diagnostic criteria is very subjective, and the doctor that diagnosed me was not as thorough as the criteria requires. Day to day, I feel different, and I’m not aware of any other condition that has that same quality to it. And it seems hard to deny that someone has fibro if they say they do – if all doctors have to go on is a patient’s report, no wonder some don’t want to consider it real.

On the flip side, the article brings up the case of depression, which also is diagnosed using only patient reports. No one knows that you are depressed, except through perhaps how you speak, or how you move, or through the things you say and the emotions your exhibit. Although I have been diagnosed with depression for over 10 years, and treated with medication for over 3 years, I never once really considered my pain to be due to depression. I have had a predictable pattern of episodes, and this just didn’t fit. But in the absence of some other cause, I can understand why depression is an alternative diagnosis.

The second issue is gender – why is it that a condition that primary affects middle-aged white women have a controversy surrounding the reality of the condition? Why are self reports by women not believed? Why can’t women have a condition that relies on their knowing their bodies better than some doctor who doesn’t even know me? It sort of reminds me of some of the thinking behind the medicalization of birth – in addition to thinking that birthing is inherently dangerous, there’s also a sense that women are unable to effectively handle everyday life experiences, like this doctor says:

Most people “manage to get through life with some vicissitudes, but we adapt,” said Dr. George Ehrlich, a rheumatologist and an adjunct professor at the University of Pennsylvania. “People with fibromyalgia do not adapt.”

Third is the issue of the drug companies – if fibro is not “real” (or even if it is), I find the drug company’s direct advertising really stomach turning. My stomach turns because again, there are two sides: on one hand, I appreciate knowing about all the drugs and not just having to depend on a doctor to give me all the pertinent information I need to know to take advantage of things that might help me. On the other hand (of course) all this advertising could definitely make you think you have something that’s associated with things that are normal (“Do you wake up in the morning and go to sleep at night?”). I’ve struggled with this with depression as well – am I really sick, or am I just unable to cope with everyday things that other people do fine with?

But let’s say that it’s true – I am unable to adapt – why is that seen as a lesser condition, or not a condition at all, in comparison to someone’s else’s body who is unable to produce insulin, or pump blood efficiently through their body? Of course, the latter conditions are directly life-threatening, but so is depression, albeit in an indirect way. Why is it that we see psychological conditions as personal defects different from a defect of the body?

I don’t know if I got sicker as a result of my contact with the medical establishment, as one of the doctors in the article suggests:

The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.

“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.

Sicker? Or more aware? I think I became more aware, as doctors asked me to describe exactly what my pain felt like, when and where it occurred, what made it better and what made it worse. In the same way, the therapy that has accompanied my depression has forced me to be more aware of my thoughts and moods, so I’m more aware of when I’m feeling depressed. So, in that sense, I don’t know if I’m sicker than if I would have been had nobody paid attention to my pain. Awareness can become obsessive and neurotic, I know. But is that what’s really going on with fibro? I don’t know.

I do think that life was not meant to be pain-free, and some aches and pains just come with the territory. But how are we to know what is more than what should be? I’m a graduate student in a rigorous program with two small children and a marriage, all of which deserve 100% commitment from me – what if this is just what I set myself up for? Am I being, honestly, just a wimp? If I’m not as strong as I’m “supposed” to be, in the absence of being aware and taking medications and seeing doctors, what should I, or other people like me, do? In the absence of diagnosis and treatment, the depression and the pain would probably lead to death, either by suicide or simply not taking care of oneself. Would the doctors in this piece who don’t believe in fibro think that people who can’t adapt simply just should not exist?

3 thoughts on “is it real? does it matter?

  1. Hello..
    My mother was having acute Fibromyalgia for quite some time..
    then she found relief in Ayurvedic Medicine..It works & getting back to normal..
    Dr.Phiro Yogi has developed a research medicine which is 100% effective, safe & have no side effects..
    http://phiroyogi.blogspot.com.
    salma

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  2. It is so easy for someone to believe that a problem they don’t personally have isn’t all that bad. Hang in there.

    Responding to your concern about drug companies, my son has Crohn’s disease, common enough to have a large patient base, and there are new treatments, which it is really good to have as they may prevent the need for surgery. The drug companies fund the patient organizations, which do a lot and have a lot of useful support information. There is the risk that there will be a tilt to drug cures instead of identifying environmental triggers. (The epidemiology points to a combination of genetic and environmental factors.) It is weird to see the drug ads on TV.

    My mother has pulmonary fibrosis, also common, but does not appear to respond to drug treatments, and the patients mostly die within a few years, instead of living with the disease, like Crohn’s. Very small patient communities, not much funding. Mostly caused by environmental factors, although there is one kind that seems to be genetic. The PF people are lobbying Congress right now for federal funding for research on the disease.

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  3. thank you both for your encouragement. OW – I’m sorry about your mother – I knew she was ill, but I just googled PF, and I can’t believe that a condition with obvious life-threatening symptoms is not receiving federal funding for research.

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