Unmanned and Unmoving

Almost 90% of people diagnosed with fibromyalgia are women.

However, we don’t really know whether fibromyalgia is more
common in women than in men.

Confused yet? Today, we will attempt to explain this paradox in three different ways: statistically, medically and sociologically.

Firstly, statistics. The logical inference from the 90% statistic should be that women are just nine times more likely to have the disease. This wouldn’t be unheard of; red-green colour blindness is more common in men by a factor of thirteen because of their genetics and osteoporosis is four times more prevalent in women due to anatomical differences. But we are yet to find any scientific reason as far as fibromyalgia is concerned. And that really ought to be the end of this post.

However, you may recall that some 75% of people with fibromyalgia remain undiagnosed. So it is technically possible that the disease is distributed equal between both sexes, but that women are simply far likelier to be diagnosed.(If you run the calculations, this works out to diagnosis rates of 45% for women, but just 5% for men.) Granted, this is only a statistical possibility, and seems absurd given the extreme 9:1 ratio. To understand why perhaps it isn’t, we must look at medical practice.

The current criteria for diagnosing fibromyalgia involves a points system, in which patients score for recent pain in nineteen areas of the body, as well as the presence and severity of other symptoms (fatigue, waking up unrefreshed, trouble thinking or remembering, abdominal cramps, headache and depression). High scores are indicative of fibromyalgia, if the symptoms have been present for at least three months and cannot be explained by any other disorder.

tenderpoint
The eighteen ‘tender points’ – outdated but still the top Google image result for Fibromyalgia.

Prior to 2011, however, the most widely accepted procedure involved testing patients for oversensitivity to pain in eighteen designated ‘tender points’. It took decades, but this older test was replaced for one simple reason: women in general are more sensitive than men when you prod at their joints.

But we can dig deeper than that. The old guidelines, so clearly designed for women, were compiled and accepted based on an even older impression, that fibromyalgia is a “women’s disease.” It was first noticed in women, so it was defined around women’s symptoms, so mostly women were diagnosed, so its definition was refined to match those women…  At every stage the gendered label was confirmed and reinforced.

The cycle continues still today, as most specialists who encounter the disease finished medical school before 2011, and many still own textbooks claiming that men can’t get fibromyalgia. Most studies concerning the disease only include women, for they are easier to find and will produce results that control for (theoretical) variables stemming from sex. Results that, because of the many (known) variables stemming from sex, may not apply to men.

But men being underdiagnosed is far from unusual when you consider the wider context, for almost every other invisible and mental illness is the same– most people don’t seek medical assistance, but most of those who do are women. The labelling persists too, for even gender-neutral criteria cannot produce gender-neutral doctors. According to no less than the World Health Organisation, “doctors are more likely to diagnose depression in women compared with men, even when they have similar scores on standardised measures of depression or present with identical symptoms.”

Which brings us to sociology. And here we find the strongest reason why most men go undiagnosed: pride.

Our society has a prescribed role for men, and expectations created by that role permeate our culture. Men are strong. Men are providers. Men don’t get emotional. Men don’t cry. Women talk through their issues, but men just get over them. Women in pain deserve help, but men in pain… they need to grow a pair and suck it up.

Little surprise, then, that men visit their doctors less frequently than women, that they are significantly more likely to skip recommended tests and screenings. Little surprise that they are twice as likely to turn to alcoholism instead. Little surprise that most don’t even begin the lengthy process of diagnosis.

For a man, even being tested for a chronic illness is an admission of inadequacy. An admission that he may be ‘weak as a girl’, unable to ‘shrug it off’ or to simply ‘man up.’ That he may be unable to work from nine to five, may find the ‘heavy lifting’ at home literally impossible for lack of ‘manpower’ and may be incapable of sustaining the occupation and hobbies that once defined him.

Hence even men who suspect that they need treatment don’t usually seek it. Even men who do seek help are often turned away without being checked for a “women’s disease,” and even those who do achieve diagnosis will be faced with a loss more devastating than any physical restrictions – the reduction of their ‘manliness’ and their worth.

I am one of the exceptions, and I’m also one of the lucky ones. I’m decades younger than the typical fibromyalgia sufferer and the wrong gender, yet I was diagnosed after six months as opposed to the five-year average. Fortuitously, the senior rheumatologist I was actually referred was overbooked and a family friend was in a position to find me an appointment with a less experienced (i.e. younger) alternative, who just so happened to be the only specialist in the city who had seen fibromyalgia in men before.

I had the flexible lifestyle of a university student and a family pushing me to keep investigating my symptoms. And even so, it took me months to admit that my injuries weren’t healing like they should. But if I’d had a full-time job to lose, if I’d had a family to support, if I’d lacked any of the drive, the flexibility or the luck, if I’d had less time to devote to pain management, if I’d been determined to show a brave face regardless… statistically, I’d still be undiagnosed today.

Awareness of fibromyalgia and of invisible illnesses is about more than a passing recognition that these things exist. It must include an assessment of our own health, a recognition that we are vulnerable too, and a willingness to seek help without feeling ashamed or unmanly. An ability to discuss feelings and weaknesses, and an acceptance that they are not the same thing.

If only women turn up for treatment, we will increasingly see invisible illnesses as women’s conditions and doctors will increasingly look for signs that female biology is more likely to provide. Perhaps these conditions are, truly, more likely to occur in women. But unless more men open up, we may never know for sure.

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