'The real me shining through M.E.': Visualizing masculinity and identity threat in men with ME/CFS, Lucina Wilde et al., 2019

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by MeSci, Jun 15, 2019.

  1. MeSci

    MeSci Senior Member (Voting Rights)

    Cornwall, UK
    Source: Psychology of Men & Masculinity


    Date: April 30, 2019

    URL: https://www.dora.dmu.ac.uk/handle/2086/17973

    'The real me shining through M.E.': Visualizing masculinity and identity threat in men with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome using photovoice and IPA
    Lucina Wilde, Kerry Quincey, I.R. Williamson
    - Institute for Psychological Science, De Montfort University, Leicester, UK


    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 utilised a phenomenological approach and an adapted version of Photovoice to gather and interrogate self-authored photographs and interview accounts from ten 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 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 CFS cope with identity threat across personal, social, and cultural contexts, whilst 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.
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Meh. Identity is bull. It's loss of function that is significant. Identity comes largely as a result of function: what we do becomes who we are. I'm the same person I was a decade ago when I fell ill. My life has effectively stopped, my identity fixed from this point. It will resume the minute I can be functional and have agency again.

    All of those consequences are the direct result of overt discrimination and denial of all significant health care and social support resources. Fix that and the whole "muh identity" becomes entirely irrelevant. It's like arguing what kind of decor people prefer in their prison cell when subject to lifelong imprisonment on false charges. Just fix the damn wrongful imprisonment and there won't be a need to talk about curtain choices.
  3. alktipping

    alktipping Senior Member (Voting Rights)

    well being a man myself I can say in all my years living with m e I have not spent one moment thinking about my identity as a human being . perhaps self centred naval gazers actually care about such drivel .here in the real world I am more concerned with surviving this disease and hopefully seeing the day when philosophical musings have no place in medicine .
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

    Having M.E. as a man has caused me to reflect on masculinity, what makes men attractive to the opposite sex, and gender roles. I don’t have time to write too much on it now but even if one would like to ignore gender roles as out of date, they do seem to me to come up in attractiveness ratings. So for example a facial scar/similar might have a bigger effect on a woman’s attractiveness to the opposite sex than a man’s. Similarly a man’s ability to earn money may have a bigger effect on his attractiveness to that of a woman. I have seen lots of women with M.E. in my country who couldn’t work in paid employment or who could only work part-time go on to marry. I struggle to think of any men who have done so. I’m not saying this is absolute rule but I still think each gender can face its own specific issues.
    Sid, V.R.T., CRG and 21 others like this.
  5. Barry

    Barry Senior Member (Voting Rights)

    Inevitable really.
  6. JemPD

    JemPD Senior Member (Voting Rights)

    @Dolphin I have observed what you say in your post to be correct.

    In addition...
    Oh how very well put!
    Male, female & everything in between & neither.... just get us all the hell out of our cells!
    Arnie Pye, Chezboo, alex3619 and 14 others like this.
  7. Jim001

    Jim001 Established Member (Voting Rights)

    Identity is the least of my concerns. I dont struggle to find an identity, either in this illness, or in the little bits of my life that are less touched by it. As others have said, just get me the hell out of this mess. Then I might cobble together some kind of bare bones identity as I head back out into the world. Maybe what is noteworthy about men with M.E is that we largely drop our identity as part of our process of trimming down as we try to live more economically within our limited energy. Sometimes I think about my identity as modular, where I have dropped off my humor, my masculinity, my need to achieve, be physically attractive, intelligent, etc.. Trying to uphold these elements of identity are simply too energy intensive.
    Hutan, Shinygleamy, shak8 and 7 others like this.
  8. Barry

    Barry Senior Member (Voting Rights)

    I suspect as always it is going to be very individual.

    For a lot of people the first time the identity-and-ME issue will have crossed their mind is when this thread popped up. For a good many others it could well be a real issue, albeit difficult to talk about, but in a much more real way than the arty farty presentation some of these psychologists insist on, sometimes seeming more concerned at showing how clever they are (but maybe that's just me not knowing half the time what the hell they are on about).

    I think it is crucial to recognise and respect both perspectives, because there will be real substance on both sides when it gets down to real people.
  9. rvallee

    rvallee Senior Member (Voting Rights)

    It seems this flows from the idea of "illness labels", where all we're doing is slapping a label on ourselves to justify moping around and being dissatisfied with life. Or something. It's all very vague and frankly incompetent.

    Remove the label. Remove the illness. This is frequently discussed in the "sick role" and similar ideas. All dubious concepts that are needed to give the illusion of legitimacy to disease denial. It's not a disease, it's a label. It's not an illness, it's an identity.

    Basically: all psychosocial fluff is garbage, a sort of Occam's razor in reverse. Rube Goldberg's razor, I guess?
    Last edited by a moderator: Apr 19, 2023
    Shinygleamy, shak8, Viola and 2 others like this.
  10. alex3619

    alex3619 Senior Member (Voting Rights)

    I finally figured out who I was during the time I was going from mild to moderate/severe ME. It was a bad time, but I was still able to figure out where I wanted to go in life. I just lacked the capacity.

    I am happy with WHO I am. I am not happy with WHERE I am. Like several people on this page, my issues will be largely fixed once we have a cure or effective treatment.

    There are issues with gender, but for me they are more to do with society and other people's expectations. Just as many of the problems pwME face are due to societal expectations. We are sick, but society is dysfunctional.

    Now I cannot say for sure there wont be some men, and women, who have genuine issues with masculinity and femininity. To my way of thinking, this is again much more to do with society and not the individual.
  11. rvallee

    rvallee Senior Member (Voting Rights)

    Same here. I think I became someone better. Maybe, can't really compare with the alternative but adversity does reveal who you are. But who isn't the whole thing. Being self-actualized in a medieval oubliette isn't quite the same thing as being half-way there while on a trek during a vacation.

    It's a damn irony how so much is written about us being weak and confused when in reality it takes so much strength and resolve to survive this nightmare, more courage than any of those jerks will ever amount to. What arrogance some people can display when they feel superior.

    And so much fishing for repressed trauma by people who are most responsible for causing more trauma than most of us will have experienced before. I couldn't even really cite a traumatic event in my life, nothing rises to that level. But this nightmare, right here, that I'm experiencing, yeah that's genuine, willfully-inflicted trauma by people who claim to help but are too foolish and inept to understand.

    Dealing with a broken body is doable. It's dealing with a reduced mind that is hardest, to have your cognitive faculties so reduced that you can't even express yourself properly. So damn frustrating.
    shak8, Hutan, geminiqry and 9 others like this.
  12. TiredSam

    TiredSam Committee Member

    Should read:
    And I wholeheartedly agree with this:
    Although I am rather concerned about whether that might be a typically male perspective. We need to do a study and call it "An exploration of gender-specific perceptions and reflections on the thematic development of an Interpretative Phenomenological Analysis of the integrated visual and verbal data from 10 subjects identifying as male". And then perhaps we could analyse people's reactions to that.

    Full marks to the author for getting the word "paucity" in there though.
    CRG, shak8, Midnattsol and 4 others like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)


    I wonder whether many men have been told to "man up" or something similar?

    Also, I wonder whether men and women would be treated exactly the same on average when looking for a seat? I have noticed say in photos sometimes the women sit down while the men stand up behind them.
  14. rvallee

    rvallee Senior Member (Voting Rights)


    It's probably most of us, frankly.
    alktipping, cfsandmore and Dolphin like this.
  15. Mithriel

    Mithriel Senior Member (Voting Rights)

    My husband hurt his back moving freezers at work in the days before health and safety. As a young male he was berated on the bus home for not standing and giving an older person a seat. If you are a respectable looking person it is worse. They would not complain to the face of a tattooed skinhead.

    ME people get told they are vicious horrible people but if we were not so nice they would be too afraid to accuse us. Mothers of ME children are accused of Munchhausen's by Proxy by social workers who are too afraid to go to houses where the children are in danger of being killed.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    via: Dr. Marc-Alexander Fluks

    "Chronic fatigue caregiver urges people to listen to those who suffer

    Galen Warden cares for her son, James, who suffers from a debilitating
    form of Chronic fatigue syndrome. She has advice for others in her

    9:30 a.m. GMT Feb. 6, 2022

    It's unfortunate that the media outlet uses the heading "chronic fatigue" but I wouldn't let that put people off this honest and heartfelt message.

    "James was like: 'I can't' and we were like 'Just do it. Just man up'. Don't do that"

    "He suffers every day, he has pain every day & a lot of that is because we didn’t listen”

    “Cancer was a walk in the park compared to this”

    I'm not sure whether this link will work worldwide:
    If people find another link, please let me know

    alktipping, cfsandmore, MeSci and 3 others like this.
  18. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    London, UK
    There may be specific annoyances for men with ME, but gender norms being what they are, people with chronic illnesses are likely much better off with wives than with husbands.
  19. Remain in Light

    Remain in Light Established Member (Voting Rights)

    'The real me shining through M.E.': Visualizing masculinity and identity threat in men with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome using photovoice and IPA

    Staving off threatened masculinity with beer ..
    I like it , but it's been done before
    Hutan likes this.
  20. CRG

    CRG Senior Member (Voting Rights)

    To quote one wife of my acquaintance, whose husband had ME/CFS - "I got fed up with him lying in bed all day so I sent him back to his mother"

    There aren't good stats but there's a lot of anecdotal views about the role of illness as a basis for divorce, and statistically women are more likely to precipitate proceedings. Also appears to be (at least in England & Wales) a gender differential in who cares for who - quote from Guardian on ONS data, (I can't find the report ONS :mad:) https://www.theguardian.com/society...ce-as-likely-to-be-informal-carers-ons-report

    "There is also a difference in the people men and women are providing care for, with men more likely than women to care for a spouse. Whereas men tend to either care for their parents or spouse, women often provide care to a broader range of people, including non-relatives. When a need for care arises, women tend to take up the role."

    Given the many of cultural and class differences, on balance I think it's difficult to generalise but it is probably wrong to rely on any certainties about male/female roles in modern developed countries. My own experience as bloke was that despite being ill I was far more a carer than a caree.
    alktipping, TiredSam, MeSci and 4 others like this.

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