“The real me shining through M.E.”: Visualizing masculinity and identity threat in men with ME/CFS using photovoice and IPA.- Wilde et al 2020

[Sly Saint]

“The real me shining through M.E.”: Visualizing masculinity and identity threat in men with myalgic encephalomyelitis/chronic fatigue syndrome using photovoice and IPA.

In:
Psychology of Men & Masculinities

Abstract
Phenomenological research in the context of myalgic encephalomyelitis (M.E.) or chronic fatigue syndrome (CFS) has predominantly explored women’s accounts. Due to the paucity of research highlighting men’s experiences of living with M.E./CFS, the aim of this research was to explore their visual and verbal accounts to gain a more in-depth understanding of how they make sense of their diagnosis and dual identity as a man with a stigmatized, and often misunderstood, chronic illness. Working within a critical health psychology framework, the study used a phenomenological approach and an adapted version of photovoice to gather and interrogate self-authored photographs and interview accounts from 10 men living with M.E./CFS. An interpretative phenomenological analysis of the integrated visual and verbal data led to the development of three themes: “Loss of Masculine Identity as a Man with M.E./CFS,” “Marginalization attached to M.E./CFS and Masculinity” and “Coping with Dual Identity by Adjustments, Assimilation, and Acceptance.” The findings show how men with M.E./CFS cope with identity threat across personal, social, and cultural contexts, while making adaptations in their perceptions and performances of masculinity. We argue that participant-authored photographs could be used by researchers, activists, and practitioners to facilitate increased understanding of and support for men with M.E./CFS. (PsycINFO Database Record (c) 2020 APA, all rights reserved)

https://psycnet.apa.org/record/2019-32617-001

 

[Invisible Woman]

Am I being sexist, here?

We have money to spend on this and not research that might actually alleviate symptoms if not cure?

We mustn't be dualist but it's okay to talk about dual identities? WTF? Is it not the change and how an illness affects one's sense of identity, anyway?

Women go through exactly the same thing you know.

We argue that participant-authored photographs could be used by researchers, activists, and practitioners to facilitate increased understanding of and support for men with M.E./CFS.

What?

 

[Dolphin]

I’m not sure this study cost any charity money and probably came from a pot of money that wouldn’t have gone to biomedical research anyway.

Whether taxpayers’ money should go to a lot of gender studies research is certainly a reasonable question. A lot of it has been described as grievance studies and seems to be driven more by ideology than empirical findings. I’d be much more interested to see studies with exact comparisons between males and females to see what are the actual differences rather than ideologically-driven presumptions.

However, I do think ME/CFS can have a big effect on men. I can think of very few men who go on to marry, have children, etc. if they are unable to work full-time due to ME/CFS while I have seen quite a lot of women who go on to marry, have children, etc. despite not being able to work full-time.

 

[NelliePledge]

Research using India Pale Ale -interesting

 

[Invisible Woman]

However, I do think ME/CFS can have a big effect on men. I can think of very few men who go on to marry, have children, etc. if they are unable to work full-time due to ME/CFS while I have seen quite a lot of women who go on to marry, have children, etc. despite not being able to work full-time

Absolutely no question you're right. However, there are a great many women who also never get to marry or have children too.

Also roles are not that clear cut in real life. When I got sick I was the breadwinner - my salary paid the mortgage. If we'd had kids at that stage IM would have had to carry the burden of childcare for financial reasons if nothing else.

More women than men have the disease so it seems likely that there will be more women who are more mildly affected and the more mildly affected are more visible.

In addition, it may be that women are more likely to be erroneously diagnosed with ME when presenting with early stages of other conditions because of outdated perceptions about women and emotions.

Suffering is suffer whether you are male or female.

I grant that an article about a male suffering from breast cancer raised the question of how differently men with breast cancer are treated. It's not seen as as big a deal, they are on wards or side wards where apart from staff & visitors are the only males in view. That was worthy of highlighting because they were being treated as though their suffering was less than women's. Deeply unfair.

 

[Trish]

Suffering is suffer whether you are male or female.

Suffering is suffering. I so agree. I think of my daughter who has never had the chance to marry of have children because of her ME. I doubt there has been any study done on which gender has the worst of the situation. Let's not make divisive assumptions.

 

[Dolphin]

I don't think I really should need to say this, but for the avoidance of any doubt, I never said that all women can/do go on and get married and have children. Nor did I say that women don't suffer.

I made the empirical observation that I have seen a very low percentage of men who can't work full-time go on to get married and have children with the percentage of women who can't work full-time, going on to have marry and have children being noticeably higher. This is mainly from knowing hundreds of people from my activities running an ME national organisation over a number of decades.

 

[Diluted-biscuit]

The study says similar work has been done on female patients in the past, it actually implies a heavy female bias on this kind of work. I have no clue if that’s true but assuming it is I fail to see how this is sexist. Nonsense maybe but I’d say the same whatever gender was being talked about for stuff like this.

 

[Dolphin]

There are probably different issues. There is quality of life due to the illness, but then there are also specific issues like attractiveness to the opposite sex (if one is heterosexual). I would think that talking about masculinity (the title of this thread) (and femininity) relates a lot to attractiveness to the opposite sex.

I think not being able to work full-time, or not at all, could have a bigger impact on average on a male's attractiveness to the opposite sex than a female's attractiveness of the opposite sex.

Conversely, if a condition led to disfigurement of some sort, that might have a bigger impact on female's attractiveness to the opposite sex than a male's.

 

[Invisible Woman]

I guess I'm looking at it from the angle that if you have it, you have it and if it's a disease where there's stigma then your stigmatized regardless of whether you're male or female. So I would have considered this sexist if it was about women. Everyone who has it is stigmatized.

I think not being able to work full-time, or not at all, could have a bigger impact on average on a male's attractiveness to the opposite sex than a female's attractiveness of the opposite sex.

I think most people these day need both partners to work. Apart from temporarily during maternity leave where there is still some income coming in.

Conversely, if a condition led to disfigurement of some sort, that might have a bigger impact on female's attractiveness to the opposite sex than a male's.

The psychological impact of facial impact on a person has an impact regardless.of sex I think. One of my uni pals was a gorgeous, rugby player (like a brother to me, though), I got lots of envious looks if I was down the pub with him, but he couldn't see that because his face was heavily marked by acne scars. I think guys are just expected to cope better, which is unfair.

 

[Dolphin]

I guess I'm looking at it from the angle that if you have it, you have it and if it's a disease where there's stigma then your stigmatized regardless of whether you're male or female. So I would have considered this sexist if it was about women. Everyone who has it is stigmatized.

There is general stigma and there is attractiveness to the opposite sex; there are not necessarily the same thing. For example, for most of the time the size of a woman's breasts has little impact on her life. But a woman with bigger breasts could be more attractive to some men than a similar woman with smaller breasts. Similarly, a taller man could on average be more attractive to more women than a shorter man. Attractiveness is an odd thing.

I think not being able to work full-time, or not at all, could have a bigger impact on average on a male's attractiveness to the opposite sex than a female's attractiveness of the opposite sex.

I think most people these day need both partners to work. Apart from temporarily during maternity leave where there is still some income coming in.

That may be so, but that doesn't necessarily mean that a man and woman who can't work full-time or at all will have their attractiveness to the opposite sex equally affected by not being able to work full-time or at all.

Conversely, if a condition led to disfigurement of some sort, that might have a bigger impact on female's attractiveness to the opposite sex than a male's.

The psychological impact of facial impact on a person has an impact regardless.of sex I think. One of my uni pals was a gorgeous, rugby player (like a brother to me, though), I got lots of envious looks if I was down the pub with him, but he couldn't see that because his face was heavily marked by acne scars. I think guys are just expected to cope better, which is unfair.

My point was not that having a facial disfigurement would have no effect on men, but that in terms of dating and attractiveness to the opposite sex, it might be less important than for a woman.

I don't think it's really that controversial to say that the influence of different factors in terms of what is attractive to male and female heterosexuals is not exactly the same.

 

[Invisible Woman]

There's attractiveness to others and there how you perceive your attractiveness to others to be.

I think are talking about flip sides of the same thing, but both very real.

That may be so, but that doesn't necessarily mean that a man and woman who can't work full-time or at all will have their attractiveness to the opposite sex equally affected by not being able to work full-time or at all.

Perhaps we simply come from different worlds, but from my background a female unable to pull her weight is not attractive at all. Whether she works full time or not. If she works part time or not at all then she will be pulling her weight in other ways.

I can see that going back 30 years where a man would be the breadwinner, his wage was essential for the household. No dispute there, but no one would want to tie themselves to a woman who wouldn't contribute - unless maybe you were in the higher socio-economic brackets where you could afford the trophy wife, or the socializing wife was part of your status.

 

[TiredSam]

Am I being sexist, here?

We have money to spend on this and not research that might actually alleviate symptoms if not cure?

We mustn't be dualist but it's okay to talk about dual identities? WTF? Is it not the change and how an illness affects one's sense of identity, anyway?

Women go through exactly the same thing you know.

What?

Interviewing ten blokes with a few snaps is not science. They really don't need to do it on my account. The use of "masculinity and identity threat" in the title shows that they've reached their conclusions before starting anyway. There are many views on what is a masculine identity, did they define their terms? How do they distinguish between the affects on male identity due to ME and the affects on male identity due to a multitude of other factors including being a typical screwed up bloke?

 

[alktipping]

navel gazing twaddle . I have never spent a moment of my life thinking anything about masculinity or how being a man with this shitty disease is any harder than being a woman or any other gender identity considering some people consider themselves to be totally asexual . it is of no scientific benefit and as far as I can see has no benefit to society as a whole it is the kind of discussion a small number of people in academic circles might have to fill a minute or less of time .

 

[Dolphin]

Personally I can see how a heterosexual man with ME could feel less masculine and that this could cause them stress in particular ways and in some cases might lead to behaviours that are not good for their health. For example, generally men do more of the heavy manual work in a household. Do they sometimes or often still do it either due to their own views of masculinity or the views of others such as their partners? Does this lead to stress in relationships? Do they still take on the protector role? As a father, they may have played sports with their kids or hoped to but be unable to do so or do it a lot less: how does this affect them. I remember a man (who worked full-time) telling me he was worried he might not be able to play football with his kids.

Maybe I need to say this explicitly but this doesn’t mean that (heterosexual) women don’t have their own stresses which might be more acute in other areas or at least have variations on the themes (e.g. mothers too can feel doubt about how they are as a parent).

Edited to add: many parenting issues are probably separate from masculinity or femininity.

 

[James Morris-Lent]

Regarding ME/CFS this sort of thing is clearly low on the list of things patients will care about. Everybody wants effective treatment, foremost. In the absence of that, basic needs taken care of. The focus of this research is surely quite trivial.


However, more generally I think there is significant need for insightful male-focused psychosocial investigations into some important trends. As far as I can tell we do have an epidemic of male slow suicide, and, more generally, alienation, at least in the US. This is actually usefully framed as something like 'biopsychosocial' - so long as one does not limit the 'psychosocial' aspect to mental maladaption of the individual. In this case the term would need to take into account something like the contradictions between what the individual has been told about 'what it means to be a man' in a certain culture/subculture, and what is actually on offer to most individuals. It seems to me that technological advances obviate much of conventional 'manliness' more and more, ever increasing the average contradiction/individual.

So we do have to figure out what to do with our boys and men, but I don't see any point in looking ME/CFS with this lens.

 

[Mithriel]

There are aspects of diseases which vary according to different factors but we live in a time where attitudes about gender, race and so on are being examined and dissected, which is a good thing and eventually we may end up with a better set of sensibilities which get rid of the inequalities of the past.

Unfortunately this can lead to problems in the real world. For instance, you may wish to be classed as gender neutral, but your doctor needs to know whether you are at risk of cancer of the ovaries or the prostate.

Real world attitudes, even if they are wrong, cause problems for men, personally and societally, that can be different from those for women (and vice versa) and we should be free to acknowledge them (and help people deal with them) without the idea being seen as sexist.

Getting ME at 40 carries different pressures and losses than getting it 20 and different ages of the body can lead to different expressions of the disease. Likewise, the hormonal and other physical differences between men and women may affect how the disease goes and we need to look at that too (in this and other diseases many of which suffer form all research being done on men).

We haven't had the proper research done, but maybe it would be a good thing and as a forum we should be open to the needs and distress of everyone. To acknowledge problems that men have does not imply that the problems of women are less.

 

[Hoopoe]

I feel less of man due to not being able to contribute meaningfully and having no role in society.

I'm also judged by others for the same reason.

It's not keeping me up at night but it's probably the biggest psychosocial problem I have.

I'm however not that concerned about how much of a man I am. I simply have this need that is unfulfilled and that is the best way to see it.

 

[Dolphin]

There was some scepticism in this thread about the idea that not having a full-time job could have a bigger negative effect on a man's attractiveness to the opposite sex than that of a woman.

I happened to come across the following in case it is of interest anyone:

https://www.huffpost.com/entry/pew-low-marriage-rates_n_5878662

 

[Simbindi]

There was some scepticism in this thread about the idea that not having a full-time job could have a bigger negative effect on a man's attractiveness to the opposite sex than that of a woman.

I happened to come across the following in case it is of interest anyone:
View attachment 10188
https://www.huffpost.com/entry/pew-low-marriage-rates_n_5878662

But that's not the same question as asking men and women how important it is that their prospective partner is well enough to have a steady job. For those men (and women) for whom this wasn't important, they may still have wanted a healthy partner - one who could still contribute to the marriage equally, although in a different role.