Fibromyalgia is a chronic disorder characterised by muscle pain throughout the body, fatigue, sleep problems and cognitive difficulties. The condition predominantly affects women, but men can also suffer from it. However, they often do so in silence, as they face cultural, medical and psychological barriers to being taken seriously and receiving treatment.
While the disorder itself is well-documented, the male experience remains under-discussed, which only furthers its invisibility.
Fibromyalgia affects 2-4 % of the world’s population. Of this percentage the vast majority are women, which has led research to focus mostly on women, with most cases in men being unnoticed or misunderstood.
Underdiagnosis in men
Gender bias plays a significant role in making fibromyalgia invisible among men. Diagnosis is more frequent in women, meaning male patients are under-represented in clinical studies and diagnoses.
However, this imbalance may exist because diagnostic criteria and assessment tools do not always capture symptoms as they present in men. A recent study found that, in specific subgroups of patients reporting pain in multiple areas of the body, men were less likely to receive a formal diagnosis of fibromyalgia compared to women, despite presenting with similar symptoms.
Additionally, society often associates chronic pain and vulnerability with women. Males, culturally, are pressured to suffer in silence or seek alternative explanations that conform more closely to traditional expectations of masculinity.
This social pressure can lead to them not seeking medical help, or to health professionals minimising their symptoms.
Men’s experiences, in their words
The experiences of men with fibromyalgia are still under-explored in clinical settings. However, qualitative – as opposed to quantitative – studies are beginning to shed light on a complex and unique reality.
This methodology allows us to capture nuances and delve deeper into the specific challenges faced by men with the disease, revealing aspects that are often overlooked in quantitative studies.
These experiences include quotes such as the following taken from a study entitled
“I can’t have it; I am a man. A young man!” – men, fibromyalgia and masculinity in a Nordic context”:
“One [male] doctor said that I have this [fibromyalgia] because I am fat. I had already lost more than 10 kilos then. You are fat. Grannie’s illness. Overweight. Lose more … And he was a skinny kind of a guy, 170 cm tall and weighted like 40 kilos … I could have twisted him into a knot if I wanted to … And he comes and says that you are nothing but fat! Lazy bastard you are … Fuck, I could have lifted him on the wall! … But the nurses are different … they have this compassion in them … when they hear that you have this illness, they kind of put the professional role aside and the human person steps in … But when you get to see the male doctors … their attitude is different … much more negative … they belittle the symptoms, say that it’s all in the head and so on … It is so fucking infuriating!”
Other studies have interviewed male sufferers on how the condition affects them in specific contexts. The following are taken from an article entitled “‘I just want my life back!’ – Men’s narratives about living with fibromyalgia”, and detail men’s experiences of fibromyalgia in a number of different areas.
“For example, somebody comes to my office with a question or a
problem … and I am just like … ??? … I don’t necessarily even
understand what this person asked … and it takes time … and he is
like ‘are you not going to answer’ … and I have to ask ‘what was your
question again?’ … it always comes out of the blue, unexpectedly … I really have to struggle to be able to answer at least
something.”
“I have always been a very sport-oriented person, but I had to give up
some hobbies … I used to do competitive dancing, but I noticed that
my body did not tolerate it anymore … It was too burdening
… as fun as it was … I just had to admit that my body does not
tolerate it anymore … ”
- Getting a health checkup:
“I was in a physical test where you had to lift 10 kg weights above your
head … there was a male sports instructor who looked like a body-
builder … I felt that they wanted to check if I was faking or something
… so I decided that I would really try my best … My result was the
best he had ever seen and he doubted if he could have done the
same … but they did not see how much pain I had … they just did not
see it … it does not matter how many times I can lift the weights …
life is not just about lifting weights above your head, is it?”
How to talk about fibromyalgia in men
We should keep the following in mind when listening to someone talking about fibromyalgia and men:
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Expectations of masculinity and psychological barriers: Masculine stereotypes and pressures may lead men to minimise their symptoms or not seek help for chronic pain. Admitting weakness or vulnerability may go against social expectations.
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Impact on quality of life: Fibromyalgia not only causes physical pain, it also affects sufferers’ cognitive and emotional capacities.
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Possible gender imbalances in medical treatment: As the aforementioned studies show, some men feel a lack of understanding and empathy from health professionals, especially from other men.
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Treatment needs to be personalised: Fibromyalgia is complex, making it essential to adopt treatment approaches that account for individual factors like gender, and psychological or social contexts.
The reality of fibromyalgia in men is complex and invisible, and influenced by gender stereotypes that hinder proper diagnosis and treatment. It is essential to acknowledge men’s experiences and adapt healthcare approaches to reduce stigma and provide effective support. Only by doing this can we improve quality of life and ensure more equitable and empathetic treatment for all patients.
