None of the “cool” doctors want to treat fibromyalgia.Posted: March 21, 2014
Fibromyalgia just ain’t cool. And there’s statistical research to back it up.
Respondents [senior doctors, GPs and final year med students] were asked to rank 38 diseases as well as 23 specialties on a scale of one to nine. …Myocardial infarction, leukaemia, spleen rupture, brain tumour, and testicular cancer were given the highest scores by all three groups. Prestige scores for fibromyalgia, anxiety neurosis, hepatic cirrhosis, depressive neurosis, schizophrenia, and anorexia were at the other end of the range.
It doesn’t show it very accurately in that quote, but the most “prestigious” disease to treat came up as MI, and the least was fibromyalgia. Colour me unsurprised. Two of the “popular” diseases occur mainly in men (especially as one of them involves have a specific set of genitals). Two of the least “popular” diseases occur mainly in women. All of the “popular” ones are dramatic conditions, which either involve slicing someone open and tinkering with a specific body part or a thin line between life and death. The unpopular ones are mostly mental health, except for fibromyalgia (which a lot of doctors would say is in your head anyway) and heptic cirrhosis (found in alcoholics, so I imagine there’s a large “you brought this on yourself” element.)
To some extent, I see where they’re coming from. In the life of a doctor, the ER moments where a patient has blood spurting from many orifices and they’re on the verge of death are no doubt seen as very exciting. Similarly, getting to do brain surgery would earn you a lot of kudos. But I think there are some other themes that can be drawn out of this:
- You have to be able to see the condition, either physically or through a scan of some kind.
- There has to be a medicine or procedure available to fix said condition
- Mental health conditions are boring to treat
- Especially women’s mental health
- Especially women’s health issues where there isn’t a clear way to diagnose
Fibromyalgia doesn’t have a test to diagnose it, you can’t give drugs to cure it. It’s found mostly in women and you can’t physically see it. It doesn’t cause life-or-death blood spurting moments (I hope…) and so it’s a boring disease. So doctors aren’t willing to put in the effort to research it. It’s much easier to say “here’s a pill, it might help, go swimming and cut out the gluten” and send them on their merry way. While possibly thinking “she’s just hysterical, it’s probably all in her head.”
It is obvious that no-one is going to make a fuss about this condition, because so very few medical professionals actually care about researching what it is that makes us so chronically ill. So, as I’ve said before, that is why it is up to us, the chronically ill, to become the professionals. From our beds and sofas, in our pyjamas with our heat pads and blankets. And possibly stoned out of our gourds on heavy pain medication.
“I have this belief that if I can read a lot of science and do a lot of self-experimentation then I can turn this thing around.”
From now until the end of April, I’m going to spend as much time as I can manage researching. I’m going to read about what the latest research on fibromyalgia is telling us. I’m going to teach myself the arguments from the pro-psychosomatic camp and the pro-medical camp. I’m going to learn about what people think fibromylagia is, what treatments have been tested and what’s worked. Because no-one else is going to be interested in becoming an expert on my condition. So I’m going to become one myself.
So, this blog is going to come pretty fibromyalgia/chronic illness focussed for a while. There probably won’t be many youth work posts for a bit, but they will come back eventually. I just feel like I need to know what’s going on with my own body.