FMS and numbers: an extract from forthcoming book myfibromyalgia

FMS and numbers: an extract from forthcoming book myfibromyalgia

myfibromyalgia book cover

My latest book, myfibromyalgia: one man’s experience of living with chronic illness, is out Monday 2 July in all Amazon store territories the world over. The ebook can be pre-ordered for £5.99 and the paperback will be £8.99 from the date of release. What follows below is what I promised I’d post one week ahead of the book’s release – a slightly adapted extract from it, to make it a standalone blog post about the statistics around FMS (Fibromyalgia Syndrome). Thank you for reading, and I hope you enjoy it! Love, Andrew x

 

Often, when talking to people, I get the impression they think fibromyalgia is something uncommon and, indeed, very unusual. That’s simply not true. The American Chronic Pain Society (there’s a society for everything these days) estimates three to six per cent of the global population has FMS. That may not seem a lot to you, but as I’m writing this I’m looking at the world population clock (you can check this out yourself at worldometers.info/world-population) and it’s showing 7,616,432,212 people living on the planet. Of course, before I’d even finished typing that sentence, the number went up. And up, and up. What this means is between 200 million and 400 million people are living with FMS. Uncommon and unusual? Don’t bet on it.

As many as 10 million of those people are living in the United States, although that country’s National Pain Foundation believes around two per cent of its population has fibro, which works out to around three million to six million people. Other professional bodies in the US place the figure even higher, as high as eight million. The point is, it’s an awful lot of people in one, admittedly very big, country to be suffering every day with a crippling, chronically painful condition for which medical science has yet to provide a fully effective treatment for, let alone a cure.

If we extrapolate from the available data and suppositions by American agencies, assuming similar percentages in other Western countries, this means around 800,000 people in the UK could have FMS. The UK’s National Health Service itself estimates two to 4.5 per cent of the UK population. From a UK population of over 61 million, that works out as between 1.2 million and 2.8 million people.

The syndrome is most commonly diagnosed in white women and very little, if any, research has been conducted on FMS in Asians, Hispanics, Native Americans and black people. One theory put forward for this, and lower levels of diagnosis in these ethnic groups, is because, in those countries where comprehensive health care is only obtained by having adequate (and expensive) health insurance, people in these groups are often poorly served due to lower incomes and an inability to pay. FMS has, though, been found to impact upon different social classes and ethnicities in roughly the same proportion. A study in Israel compared Israeli women to Bedouin women and found 3.7 per cent of both equally were affected by the condition. In Canada, the prevalence of FMS within the general population was compared to that of the Amish community and, again, no significant difference was found.

Anywhere between 75 and 90 per cent of people living with FMS are female, although the number of men with the syndrome is likely to be underreported but not so much as to invalidate the generally correct perception of FMS as being much more common among women. The false sense, though, that it is a disorder afflicting only women and not men, is very likely why, given the rampant sexism women have had to deal with since time immemorial, FMS was dismissed and even ridiculed as make-believe for a very long time by predominantly male doctors. Female doctors weren’t even sanctioned to practice for the longest time – they weren’t allowed to train in medical schools – and women were involved in the medical profession as nurses on hand to assist male doctors.

We really don’t have to delve that far into the past to find women with real health problems dismissed as being hysterical. Even the word, hysteria, originates from the Greek word for ‘uterus’. Historically, hysteria was the word applied to women displaying a variety of symptoms that included being short of breath, fainting, unable to sleep, nervous, and irritable. Those can be symptoms of many absolutely genuine illnesses, including FMS. A woman could even be labelled hysterical if she exhibited enthusiastic sexual desire.

Many of us have this idea that doctors always know what they’re talking about and, to be clear, they often, indeed usually, do. A doctor is only ever as good, though, as current medical knowledge allows them to be, and social prejudices shift and change over time. If they own those social prejudices themselves, and propagate them, or at the very least allow the fact-free bigotries of the day to inform their decision-making processes, then they aren’t being quite as scientific and logical in their approaches to patient care as we would hope for them to be. We don’t need to go a long way back in time to find an example of a time when medical practitioners allowed bigotry to inform their actions. Gay and bisexual men in the 1980s would often visit their doctor for any condition at all and find themselves being asked to take the HIV test, unnecessarily, based on the false assumption they would likely be HIV+ because of their sexuality. The most appalling treatment of those gay and bisexual men who were HIV+ in that decade – within hospitals, inflicted by doctors and nurses – is well-documented.

Setting aside the potential fallibility and flaws of doctors as human beings (and we can’t blame them for being imperfect, because we all are), there remains in the 21st Century a great deal of what we laymen and women might call ‘stuff’ that medical professionals just don’t know anything about. I once interviewed a brain surgeon, who told me that we know less than ten per cent of what the brain does, how it works. It doesn’t mean they’re winging it when they perform major brain surgery, but it does mean there’s an awful lot more to learn about the second-largest organ in the human body (the top slot being occupied by the skin). FMS is a great mystery to medical minds, and there is research being undertaken all the time now to find out what it is exactly, and how to treat it.

There is no doubt whatsoever that the historical approach to FMS, certainly up to the tail end of the 20th Century, is tied up with how women have been viewed by society and the medical profession. And while more men are being diagnosed with the syndrome, it isn’t this fact which has resulted in it being taken more seriously, it’s a combination of women’s rights being advanced and, most of all, by those with symptoms regardless of their sex not going away, not getting better and, if anything, increasing in numbers. As already shown above, the numbers afflicted are significant. They are huge.

FMS symptoms generally start between the ages of 20 and 55, although juvenile instances of the development of the syndrome are increasingly being identified and paid attention to, although children can’t choose to participate in research studies, not until they reach adulthood. As the syndrome never goes away once you have it, by the age of 80 around eight per cent of people have fibro. I suspect my own mother, 88 years old at the time I’m writing this, might have FMS but she doesn’t have a diagnosis and frankly she is unlikely to get one because of her age. Age, and its attendant aches and pains, can mask FMS in so far as pain is expected to a degree when old people can’t walk, are using walking aids, struggle to open jars, find stairs difficult, and so on. This is especially true when arthritis and rheumatism have been diagnosed. My mother has neither of those but lived with pain for decades before retirement, and, in common with many women of her era, raised her children and put up with a lot. There’s arguably not much point at her age, other than for statistics, in diagnosing a condition for which there is no treatment other than what she takes already, namely painkillers. In conversation with her, I’ve found out she exhibits many symptoms that are hard to pin on anything other than FMS.

We know that FMS isn’t communicable – that is to say, you can’t catch it from somebody else. It isn’t obviously hereditary either, although the syndrome can manifest in more than one family member. The chances of you developing it are higher when members of your family already have it. You can, however, find yourself the odd one out with your diagnosis. Nobody else in my own family has a confirmed FMS diagnosis. I only think my mum has it, but can’t prove it because I’m not a doctor.

DNA studies of family members (not mine, I’m talking generally) have identified some genes that might explain the tendency, rather than heredity, of FMS to manifest in more than one family member. The genes thought to be related to the development of FMS are involved in how the nervous system responds to pain, with some of them also linked to depression and anxiety. This might shed light on why some antidepressants, such as sertraline, have been found to alleviate symptoms.

If your head is spinning with all the data outlined above, I can’t say I’m surprised. We don’t really know how many people have fibro, just that we number in the millions the world over. Focus on that one word: millions. You are not alone if you have it, far from it. And yet, living with this chronic pain condition can make you feel incredibly marginalised, isolated and misunderstood. That results from a combination of general ignorance about this disability among the people we meet, and our realising just how heavily biased society still is towards serving and enabling those who don’t have disabilities. Unseen disabilities are even more difficult to get people to understand; there’s nothing for them to see. It’s frankly difficult, when lying on your back unable to move because of pain, to feel anything other than alone but you can guarantee, whenever you’re at your lowest ebb due to the havoc FMS has wreaked upon you, there are countless other people feeling the same way at the same time. All over the world. I don’t write that as comfort – how could it be comforting, to know others suffer as you do? – but it is a fact, and we should try to remember it when we do feel alone.

What the statistics don’t reveal is the human impact. They don’t communicate anything of the misery; the sheer intensity of the pain; the hurt and upset when we encounter people who dismiss our symptoms; the struggle to keep ourselves fed and housed and our bills, including medical invoices, paid. Still, they say that knowledge is power, and this is true. The statistical information helps medical professionals and scientists advance their understanding of FMS. There’s plenty of data to throw at the next smart-arse person who tries to tell you all about the chronic pain condition you live with every day or, worse, seeks to explain it away or paint you as a neurotic fantasist. Your illness is real.

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