#MEAction: Toxic Masculinity Made my ME Much More Punishing

[Andy]

Spending two years mostly lying in bed, it really gives you the opportunity to think. And, naturally, I was thinking a lot about what had happened to me. I mulled over the factors that had contributed to me being in the state I was, the same events you have just read about in the paragraphs above. Slowly, I realized that I wasn’t being entirely honest with myself. Nothing you have read is a lie, but there were truths missing from what I’d been telling myself, just as there are truths missing from what you’ve just read.

Let’s go back to the beginning. After I’d fainted in the supermarket, the woman being held back by her husband’s outstretched arm had asked me, “Are you okay?” Her husband had prevented her from moving forward and helping any more than that, but at least she had asked. And how did I respond? Like I said, my memory of that day is groggy, but I think I said something like, “I’m fine.” Likewise, when the cashier watched me struggle to pack my bags, she may not have offered any assistance, but I didn’t ask for the help I needed either. And it gets worse. Next, let’s reconsider the doctor’s office, the time I was confronted by the alpha male who reminded me of my PE teacher. I really don’t think I communicated exactly how much I was struggling, how ill I really was. Bravado and desire to save face when confronted by a successful, intimidating presence stopped me from being honest about my weakened condition, and I think it led me to accept the advice of “Push through it” far too readily.

https://www.meaction.net/2019/04/12/toxic-masculinity-made-my-me-much-more-punishing/

 

[TiredSam]

I don't find incorporating terms / perspectives from psychology and gender studies particularly helpful in ME advocacy. Toxic masculinity, hegemonic masculinity, the patricarchy, white male privilege, blah blah blah. Incorporating such assumptions into an advocacy article:

In a society so polluted by the influence of toxic masculinity

Is just as likely to alienate readers as to gain their support.

I suppose some people may feel the same as the author of the article and it's good to be aware of that, but I can't identify with it at all. My attitude has always been "I'm bloody well ill and anyone who has a problem with that can go f*** themselves".

 

[arewenearlythereyet]

I often wonder whether the term “alpha male” was invented by insufferable pricks to give them a day pass for continuing to behave badly?

Obviously also applies for females behaving like “alpha males”.

I presume “alpha female” is a term laced with a built in sexist viewpoint from the person that originally coined the term (nurturing, good housewife etc.)

It’s an article I found had a bizarre title for the content...a bit contrived, presumably to grab readers on the back of the 100 year women’s vote thing...like a lot of the trite opinion stuff you find in LinkedIn it’s about a headline with only a very loose connection to the content.

Given there are some interesting observations in the copy, I think the title would have been better to center on social stigma generally or perhaps question today’s disconnected lifestyle and whether people are less inclined to help one another nowadays.

Interestingly I found this article after writing the above:

https://www.businessinsider.com/no-such-thing-alpha-male-2016-10?r=US&IR=T

 

[chrisb]

Do the females with severe ME also suffer from "toxic masculinity"? Whatever that might be. It is not obvious, if they do.

 

[TiredSam]

Do the females with severe ME also suffer from "toxic masculinity"? Whatever that might be. It is not obvious, if they do.

According to this month's Journal of Psychocultural Gender Perspectives (I'm an avid reader) the correct gender-specific term for such behaviour in females is "toxic stroppiness". It's a new buzzword coined by a journalist/academic so it must be clever and we'll all be using unquestioningly within a month - it's just what you do innit?

t’s an article I found had a bizarre title for the content...a bit contrived, presumably to grab readers on the back of the 100 year women’s vote thing...like a lot of the trite opinion stuff you find in LinkedIn it’s about a headline with only a very loose connection to the content.

Given there are some interesting observations in the copy, I think the title would have been better to center on social stigma generally or perhaps question today’s disconnected lifestyle and whether people are less inclined to help one another nowadays.

Quite agree. Another phrase from the article which made me pause was

Nothing you have read is a lie, but there were truths missing from what I’d been telling myself, just as there are truths missing from what you’ve just read.

What he means is that the story so far isn't quite the full picture. But "truths missing"? Ugh.

 

[sb4]

I don't like this kind of content at all. I don't think mixing feminism and ME is productive to ME advocacy.

 

[andypants]

Do the females with severe ME also suffer from "toxic masculinity"? Whatever that might be. It is not obvious, if they do.

No, we have «Good Girl Syndrome», which I guess is “toxic femininity”.

We did a very human thing when we tried to push through before we knew what we were doing to ourselves. I get that people want to find explanations for what happened to them, but it seems unhelpful and unnecessary to label it differently according to gender, or at all.

It’s a testament to how widespread the notion of ME patients being “type A” that we keep trying to use it as an explanation for how we got so ill, even if we’re giving it different names.

 

[adambeyoncelowe]

Personally, I have no problem with it. It's his individual perspective, and I do see many men who struggle with things on their own because they're encouraged to toughen up and not talk about things.

It might not be your experience described in the article, but it doesn't invalidate his experience. Not everyone experiences the world in the same way. Likewise, I wouldn't oppose a Marxist talking about how capitalism has impacted her experience of her illness.

Everyone experiences challenges associated with their ME which are shared, and others which are unique to them. For one person, it might be the travesty of local transport which makes their life hell because they can't get around easily. They might thus write an article on how terrible local bureaucracy is for their ME. It might not match my experience, but that's fine.

Said person might also write about this from the perspective of being a Marxist (e.g., we need better state-controlled public services) or a libertarian (e.g., we need to scrap public services altogether because big government is bad), because that's their viewpoint, and that, too, is fine.

So long as they're not claiming there's scientific evidence for something there isn't, it's an opinion piece, and they're entitled to express that opinion. Of course, we can express disagreement with that opinion too.

Additionally, I think not every article is aimed at you or me. That's fine. If this article reaches someone new because of a slightly different approach, that's a good thing.

I do believe that some people have joined 'the fight' because, for instance, they think it's a disabled rights issue, or a feminist issue, or a working class or poverty issue, or an academic or scientific issue. Obviously, here we're biased towards the scientific issue, which is relevant for research contexts, clinical practice and NICE. But the feminist issues would be more relevant if a women's charity were to mobilise; likewise, 'toxic masculinity' might be more relevant to a group that's concerned with, say, men's health. Our 'audience' and our aims are different. Tailoring our message to different groups of people is probably a sensible and pragmatic approach.

 

[arewenearlythereyet]

I think it’s worth noting that the author is a professional writer so we have to be a little bit sceptical about the purpose of the article.

I suspect that this is contrived to a certain degree. The easy way to spot this in an advertorials as opposed to a genuine account of events is that the headline is disconnected to the copy and the read is a bit odd with overly neat anecdotes that appear to end with one liner sound bites that parrot other press/media messages.

I don’t doubt this guy has ME ...just that the story appears to be overembelished and clearly headline-targeted ...this makes me suspicious....particularly the link to his fiction books on Amazon.

Anyway the main issue is his interpretation of events sound a little bit off ...he should be highlighting what an arsehole his doctor was for making him push through. I think we have enough evidence that this is equally applied to women, so trying to make this about gender is well ....contrived.

 

[Dr Carrot]

I think it’s a good piece. Traditionally male traits seem completely opposed to serious illness, and we should continue to talk about this in the same way that the traditional idea of masculinity is at odds with things like clinical depression. He’s just speaking about his experience after all, not saying that all men feel like him. I know there are several men in my family who if they got this diagnosis would probably initially rage and be headstrong about it while clamming up if asked about it by family.

 

[chrisb]

I think part of the problem is that "toxic masculinity" is such a cliché that it ought to be omitted from worthwhile writing.

 

[Mithriel]

I am too old to make much sense of gender issues, but what I took from the article was that his own sense of what was fitting as a man prevented him from asking for the help he needed. This is a problem in medicine. I have uncles who have died because they would not go to see a doctor.

It is hard for men to have ME. As women we are dismissed as being neurotic and self obsessed but that is a reflection of how some sections of society see women anyway. One friend with ME was forced to endure the glares of the removal men who watched him sitting on a chair while his small petite wife lugged boxes about while tending to their 3 year old.

It all comes down to individual cultures rather than "society" anyway. Doctors were keen to assume I was playing ill for the benefits it gave me but I was brought up that you never give in to illness, taking to your bed was a terrible sin.

The way his doctor spoke to him may have been patronising but his advice was actually correct. Most cases of EBV resolve after some months, even post viral syndrome is time limited. The real problem is recognising when it is ME so the sooner we have a test the better.

 

[TiredSam]

It might not be your experience described in the article, but it doesn't invalidate his experience.

No idea where you got the idea that anyone was trying to invalidate his experience. I wrote this:

I suppose some people may feel the same as the author of the article and it's good to be aware of that

It was his choice of language and the assumptions / baggage that came with it which I found counterproductive.

Said person might also write about this from the perspective of being a Marxist (e.g., we need better state-controlled public services) or a libertarian (e.g., we need to scrap public services altogether because big government is bad), because that's their viewpoint, and that, too, is fine.

I'm not sure that it's really fine when people bring their political perspectives into ME advocacy. The only thing we all have in common is ME, as soon as an advocate decides to use ME advocacy to push their particular world view it becomes divisive. We've had it from Valerie Elliot Smith, Steve Topple, Sarah Myhill, etc etc. Annoys me every time I see ME used as a vehicle for something else. Of course there are many world views and factors which influence different people's experience of ME and they should be allowed to write about it. I actually thought the piece was very good, if a little annoying in a couple of places. I thought I would share my perspective too. For what it's worth my PE teacher booted me up the arse once. I was also brought up not to cry. I've never thought to mention it in the context of ME, because I've never found it relevant in my case, and I'd hate to feed into Esther Crawley's childhood trauma as a factor nonsense.

So long as they're not claiming there's scientific evidence for something there isn't, it's an opinion piece, and they're entitled to express that opinion. Of course, we can express disagreement with that opinion too.

Additionally, I think not every article is aimed at you or me. That's fine. If this article reaches someone new because of a slightly different approach, that's a good thing.

I do believe that some people have joined 'the fight' because, for instance, they think it's a disabled rights issue, or a feminist issue, or a working class or poverty issue, or an academic or scientific issue. Obviously, here we're biased towards the scientific issue, which is relevant for research contexts, clinical practice and NICE. But the feminist issues would be more relevant if a women's charity were to mobilise; likewise, 'toxic masculinity' might be more relevant to a group that's concerned with, say, men's health. Our 'audience' and our aims are different. Tailoring our message to different groups of people is probably a sensible and pragmatic approach.

Fair enough. But like I said, all we really have in common is ME, so I do worry about all these legitimate perspectives resulting in division and alienation if they are over-emphasised.

 

[ScottTriGuy]

I'm not sure what this (ironically) says about me, but in reading the headline (Toxic Masculinity made my ME much more punishing) and excerpt in the original post, my immediate reaction to his ME disclosure was empathy (and fear of being bed ridden).

However - admittedly - my immediate reaction to his (intimidated) behaviour when faced with an 'alpha male', was that he needed to get a spine and stand up to that alpha male, grow a pair and be a man (made more ironic in that I identify as non-binary).


Upon brief reflection, I realize that I am probably projecting my modus operandi (to reflexively challenge power) as an expectation of his behaviour. Perhaps not fair to him.

In spite of that insight, in my head part of me is still saying 'come on dude, push back against that Foucauldian power and bring this mofo down'.

 

[TiredSam]

Another thought just occurs while I'm about it - don't all ME sufferers try to push through in the beginning? And generally without complaining? I spent the first 9 months waiting until I felt a bit better, then trying to build up slowly again. The reason was basic common sense, it's what works for most ailments. So until I knew what I had and found out what to do about it, I just what anyone would do with any non-specific illness. Those around me probably thought it was the right thing to do to. Until I got the right ME education (which fortunately only took 9 months, but it could have taken years), and those around me got it to (via me), of course it's what I did and what those around me thought. It had bugger all to do with childhood upbringing, societal expectations or gender roles. It's just what anyone does when ill. And without complaining too much if possible because that's basic non-gender specific manners.

My favourite quote on that score is from Alan Bennett - Taking it like a man usually means taking it like a woman, ie without complaint.

If the chap who wrote this article wants to ascribe how he initially dealt with ME to gender-specific upbringing and societal expectations he's perfectly entitled to view it through that lens of course. I'm not totally convinced by his analysis, and am open to the possibility of there being other truths.

 

[arewenearlythereyet]

I was just musing about my PE lessons at school....generally I viewed them with a certain amount of disdain....in field sports I tended to go ‘deep field’...that allowed a certain amount of sloping off into the bushes to have a crafty cigarette (a pack of John player specials cost under 50p in those days so was quite affordable if you halved your dinner money and slim enough to hide in your shorts).

I’m not sure whether my PE teacher was an alpha male or not ...didn’t really occur to me at the time or subsequently. I never had an athletes body either (whatever that is) so perhaps sports is not something I tend to dwell on. I realise it’s a thing for some people though.

When discussing next steps with my GP during my 6 month diagnosis by ellimination I wasn’t really thinking of my sports teacher ...more about how to manage a clearly broken system and get a diagnosis and treatment since something was clearly wrong with me. I remember researching the next test in advance and making notes of results from the last tests. All the while I was advising the GP on what the NHS site said he needed to do next. At the end, once I got diagnosed with CFS/ME my only thought was that at least now there is a treatment...I just needed some of that graded exercise therapy!

There is so much wrong with all of this and sadly I don’t think our experience of GP’s is very different ... why blame oneself is what I keep coming back to?

 

[Mij]

I could say the same for the nuns in my PE classes growing up.

 

[adambeyoncelowe]

No idea where you got the idea that anyone was trying to invalidate his experience. I wrote this:


It was his choice of language and the assumptions / baggage that came with it which I found counterproductive.


I'm not sure that it's really fine when people bring their political perspectives into ME advocacy. The only thing we all have in common is ME, as soon as an advocate decides to use ME advocacy to push their particular world view it becomes divisive. We've had it from Valerie Elliot Smith, Steve Topple, Sarah Myhill, etc etc. Annoys me every time I see ME used as a vehicle for something else. Of course there are many world views and factors which influence different people's experience of ME and they should be allowed to write about it. I actually thought the piece was very good, if a little annoying in a couple of places. I thought I would share my perspective too. For what it's worth my PE teacher booted me up the arse once. I was also brought up not to cry. I've never thought to mention it in the context of ME, because I've never found it relevant in my case, and I'd hate to feed into Esther Crawley's childhood trauma as a factor nonsense.



Fair enough. But like I said, all we really have in common is ME, so I do worry about all these legitimate perspectives resulting in division and alienation if they are over-emphasised.

I intentionally didn't reply to anyone in particular. I meant 'you' in the open sense, rather than specifically in response to one person. 'One' would have been clearer, but perhaps more pretentious.

As for whether we should bring politics into the ME community... It's unrealistic to expect no one to bring their politics into anything. Politics informs our choices, how we read something, and how we respond. It's a part of who we are. That doesn't mean we should argue about Brexit or which party to vote for in the elections.

Everyone with ME will have their own personal politics, and their own related ethics and morals, and we won't all be in agreement all of the time. That's very different to people like Myhill saying supplements and keto will fix ME and that it's due to mitochondrial dysfunction, though. That's not politics (or rather, it's not just politics), that's pseudoscience. I think we can reject those sorts of 'opinions' (which make unreasonable claims about cause or treatment and might directly harm others), while having space to talk about our own subjective experience of the effects of the illness on each of us (which is unlikely to harm anyone).

I get your point about division, but by denying space to certain perspectives, that arguably is a political stance in itself. People often get more annoyed if they don't feel listened to than they do by hearing differing opinions. We probably know that more than most.

 

[Trish]

My mother's attitude to health was if it's an infection, go to bed and be pampered (I had quite a few infections as a child, but probably no more than lots of other people in the days before vaccinations for measles, mumps etc).

But if it's not an infection, soldier on even if in agony with period pains or barely able to see through hay fever swollen eyes - I was still expected to do my share of gardening and lawn mowing even though it set off awful hay fever, and as for periods - they were never to be mentioned. Perhaps this is toxic femininity.

When I got ME, I tried to treat it with my mothers 'non-infection' strategy - push on regardless and don't complain - encouraged by GP's who told me to just get on with life and try to get more exercise.

Even when I learned about pacing, other things like caring for family and working took priority, so I went on pushing (and crashing) for years. Many of us don't have the luxury of resting when we need to.

 

[arewenearlythereyet]

But if it's not an infection, soldier on even if in agony with period pains or barely able to see through hay fever swollen eyes - I was still expected to do my share of gardening and lawn mowing even though it set off awful hay fever, and as for periods - they were never to be mentioned. Perhaps this is toxic femininity.

I think growing pains featured quite heavily from my parents. My mum was and is a feminist ..does that have a bearing I wonder ? ...may be war time blitz spirit (post war carry over) or perhaps it’s the vast number of nurses in my family? Maybe I’m actually a repressed Delta Male and that’s why I so readily lapped up the GET like a lamb to the slaughter.

I think you are right It must definitely be overbearing toxic femininity...certainly in my case...apart from my dad, but I’ll gloss over that bit.

I am sad to say I've used ‘growing pains’ with my son on more than one occasion ....perhaps this is a case of the abused becoming the abuser?

This social science thing is so complicated...no wonder people feel the need to make a career out of it. I’ll stick to regular science ...it’s more straightforward.

I’ll get off this thread now ...I’m a little bit incapacitated today so I’m lingering around like the proverbial.