Men with chronic illness

I find it hard to write well on subjects I don’t know much about, so forgive me if this post is a bit clumsy, but I wanted to highlight this subject because I feel it’s an important area which isn’t discussed enough.

A few months ago, the awe inspiring Jen Brea of Canary in a Coalmine fame shared an article on her Facebook page about men with ME/CFS which got me thinking about the subject of men who get sick.  I’ve been ill for a very long time, during which I’ve been involved with dozens of websites and support groups for the chronically ill and they are all dominated by women.

I don’t know why this should be.  It is because:

  • Men don’t get M.E., Ehlers-Danlos or Mast Cell Disease?  Yes and no is probably the answer.  Statistically it’s true that women are much more likely to develop M.E. than men, and although no figures are available for gender bias in mast cell disease I’m guessing it will affect more women than men due to the way female hormones affect the immune system. However in the case of Ehlers-Danlos, which is predominantly a genetic disorder, the chances of inheriting EDS from a parent is 50% with no documented gender bias yet despite this EDS forums online are still overwhelmingly populated by women and my local EDS support group doesn’t have a single male member.
  • Men don’t need emotional support in the same way that women do?  To a degree this appears to be true.  From the support groups I’ve been involved with, whose membership is dominated by women, nearly all have men on the Admin Team (the Chairman of the ME Association is a male ME sufferer, as is the Medical Director.  The 25% ME Group is run by a male ME sufferer.  My local ME Support Group was started, and chaired, by a male ME sufferer).  And even if not actually involved in the running of a group, when men post on support forums it is most often related to research, treatments or activism – you see very little venting and few emotional posts made by men.  Men seem to need a practical, information-giving role within a group.
  • Men have other means of support?  And by this I mean they’re usually married or in committed relationships.  It’s a sad fact that when women become chronically ill their marriages/relationships often break down.  Whereas when men become chronically ill their marriages/relationships more often remain intact.  Women are innate caregivers, while men on the whole are not.  I’ve been single now for donkeys years.  I’ve tried online dating and have seen lots of adverts from women who admit to being ill in some way, yet I’ve never seen a single advert from a man with any kind of illness (disability occasionally but never chronic illness – well, apart from sexually transmitted infections).  They are out there, but from my own personal experience 75% of my sick male friends are in relationships/married while 75% of my sick female friends are single (this may not be representative of the wider population, but has been consistent over my 20 years of illness).  Interestingly, most of my female friends with EDS are married/in relationships, whereas most of my female friends with ME are single – this doesn’t surprise me as, on the whole, ME has a much greater impact on one’s ability to function even at basic levels than Ehlers-Danlos.

I’m only guessing here about the absence of men in the “ill community”.  I do have several male friends who are sick and who take part in online groups, but they make up about 10% of the membership.  I personally have struggled at times to be friends with men who are ill – I’ve found they are often depressed and angry about their situation, even many years after diagnosis, and have been too draining emotionally to be in regular contact with (I hope that doesn’t offend my male followers – I can only be honest about my own experience and I know it doesn’t apply to all men!).  Or on the flip side they are practical information-givers, and focus on research, treatments and activism, which makes it hard to form any kind of emotional attachment.  I’m sure that if a man were writing this blog post he may say that being around a sick woman, with her constant need to talk, talk and talk some more about every aspect of her life drives him nuts 😉

What is clear is that men and women are very different in their needs when ill – maybe there should be more groups with a solely male membership, where men can discuss their illness in an environment which is geared towards their particular areas of interest and without us women constantly butting in and taking over the conversation.  I know as a woman I’d feel very ill-at-ease joining a group whose membership was 90% male, and trying to talk about my feelings when they were discussing the merits of the latest adjustable bed or how to change a car tyre when you have a disability!



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