Do the lazy thing and get all my updates delivered straight to your inbox!

4 Things Men With Chronic Illness Want You To Know

DTS_Carpenter2

…I can tell what you’re thinking. “Natasha, you’re not a man, how can you tell us this?” Well, my friends, let me explain to you.

One thing I noticed pretty quickly after becoming involved in health and chronic illness blogging was the rather obvious lack of men writing and sharing their experiences. Now, I’m no psychologist, but even from personal experience, I know that the guys around me are generally less likely to talk about issues like this, especially in a public forum.

That being said, there are a huge number of issues that come up for men living with chronic illness, just like there are issues that women will experience that men just won’t (hello, lady hormones!).

So, I’ve turned to one of my best buddies, chronic illness sufferer and all-round smart dude, Colin Gorrie of Not That Kind of Dr. to talk about some of the issues that men face.

I was diagnosed with a genetic chronic illness called Joint Hypermobility Syndrome (or Ehlers-Danlos Syndrome, Hypermobility Subtype – the lines between the two are blurry) two years ago. Naturally, I turned to the internet to learn more about my condition, and to help me cope.

But the more I read about chronic illness online, the more I noticed that there were almost no male voices represented. And being a man with chronic illness brings its own challenges. Many of these challenges revolve around how the world sees us as men, and how that changes with chronic illness. 

Here are four things that I would like everyone I know:

1. Strength isn’t about how much you can lift

Whether we like it or not, strength has been part of the definition of manliness since time immemorial. Many forms of chronic illness, however, rob us of physical strength. It doesn’t matter how much we exercise or what we eat: some men with chronic illness will never be able to be physically strong.

For example, my condition causes my joints to be extremely loose. As a result, I can’t carry a bag of groceries for fear my shoulder or elbow might dislocate. As a practical matter, I can solve this problem by using a cart, taking a taxi back from the supermarket, etc. But no matter how cleverly I avoid having to haul heavy objects, I still have to confront the fact that I was born into a man’s body, but one that doesn’t meet the criteria for being man-ly.

Isn’t this a silly state of affairs? We’ve been handed down an image of a ‘proper man’ who is strapping and muscular, an image we largely accept without question. But I say we are poorer for it: the problems that men need to solve in today’s world require brains, not bench presses – courage, not curls – and willpower, not washboard abs.

With this in mind, I don’t feel so inadequate not being able to pry the lid off of a mason jar.

2. The fact that we say nothing is wrong doesn’t mean that everything is right

We run into an acquaintance on the street; invariably the first line of conversation is something like this: “Hey, man. How’s it going?”

Who among us, ill or well, doesn’t answer with “Fine” or “Not bad” or “Can’t complain”? We do this even if we’d very much like to complain. Why do we do this? Because men suck it up. Men walk it off.

This may come from an admirable stoicism, or a sadder desire not to appear weak. Whatever the cause, it means that things are generally worse than a man lets on.

For a man with chronic illness, the problem is worse: he often won’t admit his so-called ‘weakness’ to anyone – sometimes not even himself. As a result, some men injure themselves in trying to keep up with the pack; others resign themselves to mediocre lives, never getting the treatment they need. Some treat themselves with alcohol or other drugs.

It’s sometimes worth breaking through the casual “Can’t complain” to find out what a man is really feeling. You may be the only one who does.

3. Just because we can make fun of ourselves doesn’t mean that others should

If I’m uncomfortable about something, I know that I turn to jokes. Humour – especially self-deprecating humour – is a classic defence mechanism.

I once hoped this would go without saying, but when someone is poking fun at himself (or herself – women do self-deprecating humour too), it’s not okay to join in poking fun at him. Then the defence mechanism turns into an offence mechanism.

Lest you think I’m being a party-pooper here, there’s still room for good-natured, gentle teasing. But be careful not to cross the line into hurtful territory. He may not tell you if you do (see #2). If in doubt, ask!

4. Keeping up with people’s expectations about what a man ‘should be’ is a full-time job

Think about all the ways that you worry about whether you measure up. For men, it goes something like this: a man should be broad-shouldered, square-jawed, and good at sports. He should have a good job, a fast car, and star in Old Spice commercials. He should certainly be able to lift heavy things.

Isn’t this nonsense?

All these unwritten rules tell us what a man should be, and the truth is that no one, even the healthiest among us, can live up to all of them. For those of us living with chronic illness, it’s even harder because we have more limitations. And it takes a toll, no matter how enlightened we think we are. It simply takes more energy to swim against the current.

So when you see someone with chronic illness – or simply anyone who’s something other than what they supposedly ‘should’ be, remember that, for them, simply living their own lives takes a great deal of strength. And that – not lifting grocery bags – is the strength that counts.

Dudes, got anything else you’d like to add? Let us know in the comments below!

If you liked this post, please subscribe to my updates above and follow me on Bloglovin and Pinterest

I just released my first ebook in a new series! The Sick Girls’ Guide (but totally appropriate for guys too) to diagnosis! Please check it out and support my work :)

If you’re in your teens or 20’s and are struggling with chronic illness, check out my coaching services for someone to talk to who ‘gets it’.

4 Comments

4 Comments on 4 Things Men With Chronic Illness Want You To Know

  1. David Bridger
    August 24, 2015 at 8:16 am (2 years ago)

    Hi, Colin and Natasha.

    Good post. I caught the ME virus in a military hospital in 1991 and became what’s known in the ME world as severely affected. For me, that means 60% bedbound, 99% housebound, and 100% pain bound.

    I remember at around my two-year mark feeling exactly the way you describe, Colin. Took years for me to drop the macho mindset. I had after all been a military action man and a triathlete.

    Eventually, though, I let it slip away from me like a satin sheet from around my shoulders. It was easy because I had no choice. I mean, I could have persisted in pretending everything was going to be okay again some day, but once I realised the truth then facing up to is and acknowledging it in public was a new freedom.

    I learned what you’ve learned, that strength is about so much more than physical power. And that inner strength is something we build up over time, one chronically ill day at a time for years and years. What that produces is an immensely strong individual, regardless of gender. Chronically ill people are among the most impressive human beings I’ve ever had the privilege to meet.

    I hope today is a good day for your both, Natasha and Colin, and for everyone else who comes to read this post and say hello today.

    Reply
    • Paula
      August 25, 2015 at 1:02 pm (2 years ago)

      Thank you. I have finally accepted there is no cure for ME after a twelve year fight to return to work and running my own business.I tried every alternative therapy and change of eating available. It has been empowering to finally release myself and accept my lot. This is it. I will no longer let anyone judge me, not even my family. The worse side is loss of friends, social contact and relationships. No-one wants to go out with someone who is unwell.

      Reply
    • Judi
      November 12, 2016 at 8:30 pm (8 months ago)

      Being a single parent who had 3 teenaged boys I was dealing with raising running and caring for them I stepped into the man/woman shoes. I had to be strong for them and never show weakness… so when I fell backwards off a counter top and crushed L5/S1 I was totally screwed but it didn’t stop me because I did things my way… things just got worse. Thank goodness I’m more mature and had to accept my limitations I hate that word… and my neurologist said “Judi, stop fighting your body it can’t everything you want it to.”

      Reply
  2. Ben Andrews
    November 13, 2016 at 2:14 am (8 months ago)

    I really appreciated reading this, along with Bipolar and Anxiety disorders, I experience chronic pain from Facet Joint Syndrome and arthritis and have done since I was about 24, I’m 36 now. I worked as a manual laborer, moving approx 2 – 4 ton by hand daily at the time, I also loved a range of sports and body building. I was very active and physically capable then one day I simply wasnt anymore. Not to mention I have put on around 50kg since, partly due to medications and partly due to how sedentary I have become.

    Your point about when we are asked how we are etc, I think that part of this is because of our society, very few people (male or female) when asked how are you? actually respond honestly, most people ask that kind of question not anticipating anything more than fine or the like. Even within the confines of a friendship or other relationship, it is simply what you say and not something you expect a real response to. This is my hassle with ‘R U OK?’ day, a mental health initiative in Australia. But in respect to admitting it to ourselves you are correct, asking for help for me is still difficult, not to mention when there is an expectation put on you by others that you should be able to do stuff, you should be able to be a “real” man.

    I have learnt to accept that I have limitations, others still struggle with that (family), but I have also accepted that I am not a “real” man in the way it is expected that I should be. I can’t be overly manly in many respects, I can’t do a lot of things “real” men do or should be able to do. Despite knowing how to and having done so plenty of times in the past, if I got a flat tire I would have to call road side assist or my Dad to come and help.

    The “real” man concept isnt just limited to the way a man looks, but the way he acts, the way he thinks. Having a mental illness is very much seen as “girlish”, it is not manly and it is expected that we should be able to deal with out emotions like men and how dare we seek help, we are men, we deal these things alone.

    This topic is certainly something that needs to be addressed and talked about far more than it is. We have women talking about body shaming and body positive and similar things, men need to realise the same things are happening to us, especially for those with disabilities, illnesses etc.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *






Comment *