A while ago I was asked by a female Fibrofriend “what’s it like being a man with Fibro?”. To be honest it’s not something I had thought about until that point, (a life with Fibro is a life with Fibro regardless of gender), but my answer was not really exclusive to men – in a word frustrating on many levels from not being able to work, the decline in cognitive function, and the many limitations you have to get used to living with.
However, as I’ve mentioned before I am grateful that I have been able to mainly come to terms with my situation, albeit not ideal, thanks to my spiritual interest and practice, and that I have the time to indulge my creative brain with photography and music.
With the diagnosis of Fibromyalgia predominantly women, men are definitely in the minority, but is the experience of being a man with Fibro any different?
For me the challenges of life with Fibro are not necessarily different from what is shared by my female Fibro friends, aside from those symptoms caused by biological differences, but maybe there is a difference in public perception towards, and personal experience of men having a debilitating, chronic, invisible illness and disability? And might this result in less men being diagnosed?
I asked the question of fellow #menwithfibro on X and the Facebook Fibro Connect Group to try and get some insights, and received three responses, only one from a man with Fibro. I have added my thoughts and related my experience where I can.
X – @loadoftea, (female with Fibro);
“Honestly, I think it must be more difficult than for us women. #Fibromyalgia, as an illness that cannot be proven, most of the time it’s considered by others as whining, and it’s normal for a woman to whine, right ? Whereas a man has to put up with it and keep quiet. My opinion.”
In a world where sharing our experiences has become the new norm to raise awareness, there can still be the societal expectation for a man to ‘put up and shut up’ in certain settings. There is also the daunting challenge that sharing today means opening up online – it took me a while to feel comfortable, but even now I work on posts over weeks to feel happy with what I’m putting out there, as well as allowing that brain fog means it takes a while to get my thoughts in order. It’s vital to find a members-only community that understands, and where you can feel safe and learn that you’re not alone, and perhaps how to manage with your new limitations from others with the same challenges. There are men-only communities if that is what someone needs to get started.
X – @azbrittons (female);
“A male mechanic I knew was diagnosed with fibro in 2000. People didn’t believe how much pain he was in (I, F, had fibro so I understood). His job was hard manual labor & he couldn’t do it. He ended up divorced & living with his parents. He lost everything because of his illness.”
I have seen many comments of relationships failing due to the impact of Fibro, and with regards to jobs, I had to leave a management position, and cannot work due to the impact of cognitive decline. I know many women with Fibro could also share experiences of relationship failure and job loss, post Fibro. Undoubtedly the impact of Fibro on personal function will change the dynamics of any relationships for men and women, including family, friends and co-workers.
Fibro Connect Facebook Group, a male contributor I will keep anonymous;
“Lonely. There’s people who don’t believe in fibro at all. Then there are those who don’t believe you can have fibro because you are male. Then you add in the fact the there’s female only research, pictures of fibro related things are pretty much always of women. Add into that the fact that you are a young male so you are always first to be picked for heavy lifting or general help and made to feel guilty when you say you can’t. It’s not only demoralising but emasculating. I feel like I could go on for ages.”
This response raises a lot of key points, mostly applicable across genders, but keeping this post focused on the question of “being a man with Fibro” there are two key points;
1) “..you add in the fact the there’s female only research, pictures of fibro related things are pretty much always of women,”
There is a global challenge of raising awareness about, and for those living with Fibromyalgia, not just men. The problem we have in advocating for better awareness is that those who are mostly aware are those living with Fibromyalgia, chronic conditions are understandably overshadowed by awareness of, treatment and prevention of other serious conditions. The Fibro message needs to reach, and peak the interest of the whole medical community across all disciplines, businesses and wider society, portray what Fibromyalgia is, and how it impacts life for women and men, by those who live with it.
Men Need To Be Proactive!
If men living with Fibromyalgia want to be heard and taken seriously we need to speak up with our female counterparts – go from minority mindset to working with the majority, create content with male imagery or focus, connect with and support each other as men, and be proactive in volunteering for the many research requests. We need to help build momentum for Fibro awareness, and be proactive in sharing and relating to the messages of those individuals, organisations and groups who do – just a simple share or repost will suffice if you don’t feel up to sharing your personal journey. If we share our journey, we must get the balance right and be constructive to prevent the perception of “always moaning or complaining”, (although the occasional, well focused rant or share of a bad day is a great therapy and adds reality to your output!). Whatever men do, it has to complement and build on the existing thriving Fibro awareness landscape, yes this is predominantly female led and focused reflecting the diagnosis ratio. If men want more balance and to add to the narrative it’s up to us, however, as I see it, the message and the initial challenge is the same regardless of gender.
2) “It’s not only demoralising but emasculating.”
Feeling emasculated is undoubtedly a big part for men coping with a chronic illness, as there is no cure it can seem there’s no light at the end to aim for, where you will be your old self. One of the most useful skills I have worked on for 20+ years is the understanding that we can take control of our emotions, and have the power to not let the actions, words, or societal expectations dictate how we feel in terms of our value or what we can contribute, (believe me it will be a lifelong work in progress!). Fibro is real, it truly disables you. Anyone living with Fibro, male or female, has to learn to accept the physical and mental limitations that are part of it, then set and maintain clear boundaries with themselves and others. We have to rebuild our self-esteem after the setback and not feel we are less because we can’t meet others expectations or do what we used to. If Fibro is inconvenient for others that’s their problem, and this is where awareness of Fibro and chronic pain is more widely needed.
So, what’s it like being a man with Fibro?
In my humble opinion the current challenges, based on the above, several years in online communities, and my own ongoing research, are mainly the same for men and women – having the courage to share, be believed, understood and supported by the world at large. However it’s true there are some differences in societal expectations for men versus women in how they should cope. The difference is in how we individually internalise those challenges and allow our thoughts to either help or hinder us in coming to terms with our situation, find support and rebuild a life post FIbro. Fibro changes who we are and what we can do, but life with Fibro is still a life, although not the one we would have expected or hoped for.
All Images Copyright Dale Rockell Photography
Fibro & Photos 