“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

Simbindi said:
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.
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Yes, indeed, some of the 22% and 54% who didn't say it was "very important" could rule out many people with ME and probably do.

All I can say is that the overall effect doesn't seem to be equal, from what I've seen over the years, in terms of the end result of marriage, having children, etc. I tried to think of men with ME in my country who were not working full-time, who got married. I can think of one man in his forties who married another woman in her forties (so too late to have children); she also had health problems and was unable to work while he, though not able to work, did have a significant asset as he owned his own home. While it is not uncommon for women with ME who are not working full-time or at all to get married, often have children, etc.

In a thread discussing masculinity and identity, I think it is relevant to point out differences like this. The percentages of heterosexual men and heterosexual women (along with homosexual men, homosexual women, bisexual men, etc.) who experience certain scenarios aren't necessarily exactly the same. This seems to be recognised in some areas and I don't see why it couldn't happen and be recognised in this area.
 
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Dolphin said:
Yes, indeed, some of the 22% and 54% who didn't say it was "very important" could rule out many people with ME and probably do.

All I can say is that the overall effect doesn't seem to be equal, from what I've seen over the years, in terms of the end result of marriage, having children, etc. I tried to think of men with ME in my country who were not working full-time, who got married. I can think of one man in his forties who married another woman in her forties (so too late to have children); she also had health problems and was unable to work while he, though not able to work, did have a significant asset as he owned his own home. While it is not uncommon for women with ME who are not working full-time or at all to get married, often have children, etc.

In a thread discussing masculinity and identity, I think it is relevant to point out differences like this. The percentages of heterosexual men and heterosexual women (along with homosexual men, homosexual women, bisexual men, etc.) who experience certain scenarios aren't necessarily exactly the same. This seems to be recognised in some areas and I don't see why it couldn't happen and be recognised in this area.
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But you are only seeing those active in forums and support groups, this isn't necessarily reflective of the CFS/ME population overall (I've never joined a support group and only joined this forum about 15 months ago, despite having ME since 1993). I know my own daughters would be devastated if they were unable to work full time. My eldest doesn't have a partner and her career is far more important to her than having a relationship (she is heterosexual and looks feminine). I think all her female friends developed their career prior to getting into a serious relationship.

Things have also changed dramatically in the UK with regards to the support for single parents. I only managed for so long without claiming disability benefits because at the time of my divorce, single parents could claim Income Support with no job seeker requirements up until their youngest turned 16. Now single mums have to look for work once their youngest is 3 years old!

https://www.gingerbread.org.uk/info...rsal-credit/job-seeking-rules-single-parents/

So being able to work is as important for a woman as it is for a man now, even if planning to get married and have children (remember 50% of marriages end in divorce).
 
I also felt trapped in an abusive marriage because of having moderate to severe M.E. and not being able to be financially independent, as well as worrying about social services taking the children away if I were to leave my husband. I think 'gender identity' is the least of many M.E. sufferer's problems (and I write as someone who studied 'Gender Issues' as part of my Psychology degree as a mature student with M.E. at the time).
 
Simbindi said:
I know my own daughters would be devastated if they were unable to work full time. My eldest doesn't have a partner and her career is far more important to her than having a relationship (she is heterosexual and looks feminine). I think all her female friends developed their career prior to getting into a serious relationship.

Things have also changed dramatically in the UK with regards to the support for single parents. I only managed for so long without claiming disability benefits because at the time of my divorce, single parents could claim Income Support with no job seeker requirements up until their youngest turned 16. Now single mums have to look for work once their youngest is 3 years old!

https://www.gingerbread.org.uk/info...rsal-credit/job-seeking-rules-single-parents/

So being able to work is as important for a woman as it is for a man now, even if planning to get married and have children (remember 50% of marriages end in divorce).
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I don't see how that shows that the attractiveness of a woman to a man is equally affected by not been able to work at all, or only part-time, as the attractiveness of a man who can't work or can only work part-time is to a woman?

As I said earlier, I don't think it's perfectly controversial to say that (heterosexual) men and women don't put the same weight on various factors when assessing the attractiveness of somebody of the opposite sex.
 
Dolphin said:
I don't see how that shows that the attractiveness of a woman to a man is equally affected by not been able to work at all, or only part-time, as the attractiveness of a man who can't work or can only work part-time is to a woman?

As I said earlier, I don't think it's perfectly controversial to say that (heterosexual) men and women don't put the same weight on various factors when assessing the attractiveness of somebody of the opposite sex.
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It might not be controversial, but that doesn't mean it is empirically correct. I really don't give much credence to these sorts of surveys and informal observations, for multiple reasons. Obviously, people can have opinions on this issue, but that doesn't mean there is any science or fact behind them.
 
My eldest used to say her problem was that she would see a man in a nightclub who looked very attractive - until they opened their mouth...;)

Of course I'm sure this problem works both ways for women and men of any sexuality or gender identity!
 
Dolphin said:
I don't see how that shows that the attractiveness of a woman to a man is equally affected by not been able to work at all, or only part-time, as the attractiveness of a man who can't work or can only work part-time is to a woman?
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Because there is a vast difference between an initial (superficial) attraction and the deep sustainable attraction that is needed for a successful relationship between two adults living in modern society. If a man is basing his 'masculine identity' on the former, I would say he is being very unwise. The type of survey you quote is really only asking about the former - how attraction works between 2 individuals in reality is far more complex and nuanced.

If a man doesn't take into account a woman's actual (life-time needs) I would say that he will very quickly become unattractive to her. Obviously, this principle applies to all genders and all people of any sexuality in a relationship.
 
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On the issue of evidence, I've read multiple posts on how much giving up their careers has devastated both men and women - I've not been struck by any gender difference in this regard. I can't remember reading any posts by women with M.E. who have said that giving up their career was easy, or that it didn't impact on how they felt about themselves, or that they were perfectly happy depending financially on their male partner (as opposed to being thankful that there was an additional income available to support them).
 
As there is no central process for deciding what sort of ME research will be done, and if you're a social scientist whose work involves gender studies, it makes perfect sense to me that if you're interested in ME you might use whatever resources you have access to to examine how gender affects those with ME. Regardless of your gender, gender does affects all of us whether we like it to or not. While thankfully we are moving away from insisting that a woman is only valuable if she produces children and that she needs a man to take care of her, those attitudes in society still remain. So having a disease that affects your ability to produce children or your ability to take care of a woman will mean that those gender attitudes are going to impact you on some level whether you pay any mind to them or not. Many women still want men who will open doors for them and bring them flowers and many men still want a woman who can cook and clean. Should they? That is entirely beside the point as people simply do want those things. Just because you personally may think you're beyond gender constructs doesn't mean everybody else is (I knew someone who raised her son gender neutral, dressing him in girls clothes one day and boys the next, but this is exceptional, not the norm). And ME is going to affect how those gender constructs apply to men and women differently. It's not about which gender suffers more but about how they suffer. And frankly, this is exactly what BPS research is for, not in trying to treat anything (as it can't) but in helping contextualize our psychological suffering, especially as biomedical research is unable at this time to alleviate it.
 
Michelle said:
if you're a social scientist whose work involves gender studies, it makes perfect sense to me that if you're interested in ME you might use whatever resources you have access to to examine how gender affects those with ME
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But if the methodology is poor, there are lots of assumptions being made that avoid complexity, and the researcher is imposing their own 'constructs' on their research data (difficult not to do when using qualitative methods, including surveys) the results will be meaningless.
 
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It's a generally sympathetic article. It doesn't include anything that resembled CBT or graded exercise therapy approaches or ideologies.

I did find quite a bit of discussion of masculinities frustrating as I will elaborate below.
 
I've no problem with the following:
People with CFS typically represent ME/CFS as a threat to identity, agency and well-being and describe the need to overcome an inherent sense of helplessness, hopelessness, social isolation and poor self-worth in order to find meaningful ways to cope with the condition on a day to day basis (Arroll & Howard, 2012; Dickson et al.,2008). This process, some of whose elements may be common across most chronic conditions, appears to be particularly difficult in the context of ME/CFS because of the aforementioned pervasive nature of doubt and stigma associated with the condition. Phenomenological research shows that this extends well beyond encounters with ‘disrespectful and deligitimising’ medical staff to the experienced hurt and perceived rejection resulting from the scepticism expressed by some family members, potentially leading to self-stigma for some individuals with ME/CFS themselves (Arroll & Senior, 2008). Such accounts from people with ME/CFS describe the condition as ‘a dictator’ and a ‘death-trap’ and experience numbness, loss of self-hood and report feeling like ‘an empty shell’ (Dickson et al., 2007; Dickson et al, 2008).

However research using IPA had also illuminated experiences of benefit-finding including closer relationships with others and Post-Traumatic Growth through the self-discovery of ‘new’ identities. Several participants, typically after a number of years, describe a process of rebuilding which involves a complex choreographing of continuity and change which leads to a less cluttered and more authentic, day-to-day ways of living (Arroll & Howard, 2013, Whitehead, 2006).
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Where they attempt to summarise the existing evidence with regard to men:
Nevertheless, despite this expanding body of work, there remains a lack of research investigating how men experience this illness, since research to date has primarily focused on women’s accounts (Asbring & Närvänen, 2002; Edwards et al., 2007; Matthews & Komoroff, 2007). Only one study (Johnson, 2017) appears to have elicited experiential accounts solely from men. This study involved eight British men who were interviewed between two and four times each and employed a Gadamerian phenomenological framework (Gadamer, 1996). Whilst a number of findings reinforced those of previous research including experiences of scepticism and stigma, loss of former identity, a tendency for the condition to be seen in psychomatic terms, the challenges of living with a complex and fluctuating condition and accounts of adjustment and adaptation, new knowledge was generated. Johnson describes changes to men’s ‘being in the world’ as ‘disrupted, emasculated and traumatised’ and further outlines how ME/CFS threatens men’s ability to perform ‘masculine’ tasks, especially in familial and occupational contexts. In another difference to other studies (e.g. Dickson et al, 2007), the participants generally reported enhanced relationships with their partners and close family members although there was typically some loss and disruption to relationships with friends and peers.

Research into gender differences has suggested that women physically and psychologically adapt more easily to M.E./CFS and are taken more seriously by their doctors than men (Clarke, 1999; Matthews & Komoroff, 2007). Clarke (1999) also suggests women attribute the illness to stress whereas men perceive heavily physical occupations or exertions as potential causes. These studies imply that men with M.E./CFS may explain, interpret, and experience their illness differently to women; however, they do not fully explain how men make sense of their illness experience.
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The bolded bit contains quite bold statements. I've no idea whether the papers referenced justify such claims, I suspect the evidence isn't strong, if it exists at all.
 
One of the overarching social constructs which may go some way in explaining this so-called gender gap is the role of masculinity. Connell (1995) constructed a ‘social organisation of masculinities’ in which she described masculinities as plural and fluid configurations of gender practices which men (and women) move within and between in different contexts. Although her theory has been both critiqued (Moller, 2007) and modified a little in her subsequent writing (Connell, 2012; Connell & Messerschmidt, 2005), it remains an influential approach within masculinity theorising (Wedgwood, 2009) and has useful applications to the study of both health promotion and maintenance (Sloan, Gough & Conner, 2009) and chronic illness (O’ Brien, 2007; Pendeke & Williamson. 2016). Connell (1995) describes a relational patterning of masculinities in Western societies which consists of four masculinity statuses: hegemonic, complicit, subordinated and marginalized. Hegemonic masculinities refer to the attempt to ensure the dominant position of men and subordination of women through cultural ideals and institutional power. However, men can also be (involuntarily) subordinated and/or marginalized due to a perceived lack of masculine capital through structural differences and circumstances, including gay or other forms of non-heteronormative identity and sexuality, deprived socio-economic status, and health-related ‘impairments’ such as chronic illness and disability. According to the theory, whilst few men consistently meet the normative standards of hegemonic masculinity, many men benefit from its effects and therefore offer little socio-political challenge to its dominance – a position referred to by Connell (2012) as complicit masculinity.
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I'm not convinced those are the only 4 masculine statuses.

With regard to the data from this study (i.e. the Analysis & Discussion and Evaluation sections), "hegemonic" is mentioned 6 times while "complicit" and "subordinated" are not mentioned at all; "marginalized" is mentioned twice ["he is marginalized from hegemonic masculinity" and "men with M.E./CFS present as a marginalized sub-group who are at-risk of both masculine and identity threat."]

I find quite a bit of the analysis frustrating: it's along the lines of if only these silly men would give up on their supposed "hegemonic masculinity", life would be a lot easier for them. From what I recall, many of the reactions didn't seem particularly abnormal.
 
Theoretical Background

Critical health psychology explores individuals’ experiences of health and illness in marginalized groups in relation to their politico-economic, and socio-cultural environments. The approach, which adopts a philosophy of ‘scholarly activism’ and foregrounds issues of power and capital, encourages both innovative methodologies and adopting strategies for research which involve working with rather than on participants (Murray, 2014; Chamberlain & Murray, 2008).

The present study draws upon phenomenology; an approach to research which explores how individuals make sense of their experiences (King & Horrocks, 2010), and, more specifically, uses interpretative phenomenological analysis, a robust phenomenological paradigm, which has become popular in European health psychology and which focuses on yielding interpretative, in-depth analysis of accounts from a small but relatively homogeneous group of participants, who are viewed as ‘experiential experts’ in the phenomena under scrutiny (Smith, Flowers & Larkin, 2009).
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It's interesting to me that they explicitly mention the approach "adopts the philosophy of ' scholarly activism'" which many academics might try to avoid.
 
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