Where Are All The Men?
When I was first diagnosed with ankylosing spondylitis, I was informed that it was a condition "mostly affecting men in their 20s."
I remember it distinctly because it felt weirdly comforting. When I had my rheumatoid arthritis diagnosis I was told that it was more common in women in their 40s so it felt good to know I wasn’t the only man in this battle. However throughout my time posting about my chronic illness journey I've noticed that the vast majority of members of the online community are female and there is a huge under representation of men.
These women are incredible, but it almost creates a false narrative that AS and other chronic conditions are a female problem, which certainly isn't the case. The one good thing that can be said about ankylosing spondylitis is that it certainly isn't sexist and doesn't discriminate on who it affects.
Do they exist?
Looking online you wouldn't believe this is mostly a "man's disease" at all - I've only found a handful of guys willing to open up about their condition.
Every time a male has messaged me regarding AS, he has said something like: "I thought I'd message you as you're one of the few guys I've seen post about AS." I’d like to think that I'm not seen as a last resort to these people, but it shows the worrying reality that there aren't enough men with chronic illnesses who are willing to speak out.
Why are men so silent?
I think it mostly stems from society's ideas of masculinity that we feel we have to live up to. As men we are often expected to appear to be in control and having a chronic illness as unpredictable as AS can sometimes make this difficult.
We are also told that men have to "be strong" and we men, in general, are less open to "looking weak" by opening up about our feelings or vulnerabilities.
Society's expectations have made men notoriously useless when it comes to discussing feelings and ankylosing spondylitis is a condition jam packed with feelings. In the physical sense with pain and stiffness; the mental sense with brain fog and anxiety, not to mention the overwhelming fatigue which is a delightful cocktail of both.
I found myself closing up when I first embarked on my battle with chronic illness. Whenever I saw a camera come out I would hide my crutches and massively play down the situation when asked about it. I think the most extensive explanation I gave people was something like "my back is a bit mashed up now but hopefully my medication will fix it."
Bottling up about my condition didn’t help me at all; it just meant I was suffering in silence as I grew increasingly frustrated and depressed about my situation.
I think the fact that I didn't know of anyone else of my age with a these conditions made matters even worse. It felt as though I was the one unlucky guy in his 20s with a disease that I thought was exclusively for pensioners.
I hadn’t considered using Instagram for anything other than posting holiday snaps with cringeworthy captions. Little did I know there is a huge community of chronic illness warriors sharing endless support. It was a complete revelation when I discovered this existed. However, I did notice there was a distinct lack of testosterone.
Nevertheless, I was inspired to increase the male population of the community and made an effort to post on my personal Instagram account name (@JamesHollens - shameless plug) to show that things that come with AS are just part of a normal guy living life (if I count as normal).
Benefits of opening up
I find posting about my condition can be very therapeutic and receiving responses from others has really helped me feel like I'm not alone.
It also serves as a trip down memory lane as I realize just how far I have come from that 23 year old in a hospital bed unable to move, waiting for an explanation on why my body had stopped working.
I think men who have been newly diagnosed would benefit greatly from seeing more of an online male presence. I remember how afraid I was at this stage. If I had been able to see other men going about their lives with AS at the time, I think I would have had a lot more confidence that my life would return to normal again and that the flare up I was having would not be my permanent situation.
I now feel much more confident in sharing details of what I am going through with friends and they are better able to understand my situation. When I was closed off they probably thought it meant I was sometimes on crutches or made excuses to cancel plans last minute. They now realise that I’m not just being too lazy to come out to play football.
Having AS is nothing to be embarrassed about and doesn't make anyone less of a 'man'. Strength is not measured by how much you can lift at the gym. I can assure you that waking up everyday to face life with a condition like AS takes a lot more strength than benchpressing 200kg.
I think us men have a lot to learn from all the amazing female members of the online community that are so open about their journey with chronic illness. I'm not saying every male diagnosed with AS should be forced into posting about their condition but we need to lose the stigma somehow and I think a bigger online presence is one way of doing this.
However, if you don't feel like sharing these things on the internet, please don’t feel ashamed to open up to friends or family about it. Suffering in silence is only going to make our battle with AS even harder; this is a fight that needs a clear state of mind.
As a society we've recently made great progress in normalizing and spreading awareness regarding mental health issues. Now it is time to make similar steps in regard to chronic illness.
Do you live with any other conditions in addition to AS? (choose all that apply)