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(Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, Nov 8, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    This thread has been moved from the News subforum and renamed following a published paper based on Cheston's work.

    Respect and Shame in Healthcare and Bioethics Workshop:

    Peter Schaber, University of Zurich – “Respect for the Patient’s Wishes.”
    + ECR presentation from Katharine Cheston, University of Durham – “The ‘Wish to be Treated with Dignity, Respect and Empathy’: (Dis)Respect and Shame in the Context of ‘Medically Unexplained’ Illness.”

    This workshop is part of the Respect and Shame in Healthcare Bioethics Workshop Series, and is organised at the University of Exeter by the Wellcome Trust funded Shame and Medicine Project, and Supriya Subramani, Institute of Biomedical Ethics and History of Medicine, University of Zurich.

      • 1:00- 1:40 PM GMT: Respect for the Patient’s Wishes (Peter Schaber)
      • 1:40- 2:00 PM GMT: Open discussion
      • Break (2:00- 2:10 PM GMT)
      • 2:10- 3:00 PM GMT: The ‘Wish to be Treated with Dignity, Respect and Empathy’: (Dis)Respect and Shame in the Context of ‘Medically Unexplained’ Illness (Katharine Cheston)
      • 3:00- 3:20 PM GMT: Feedback from Peter Schaber
    Last edited by a moderator: Jul 30, 2022
    Arnie Pye, EzzieD, Jan and 6 others like this.
  2. Sean

    Sean Moderator Staff Member

    Well, yes.

    But I really want is competence, and honesty about where that ends.

    You want to show me Dignity, Respect and Empathy? Learn to say I Don't Know when required, and mean it.
    MEMarge, Arnie Pye, Trish and 13 others like this.
  3. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Can I find it ironic if this paper focusses on the patient in terms of how they should be approached by the health care provider? How to treat the patient (empathy, respect dignity).

    For our illness group and others defined away by the BPS this issue is moot. I imagine clinicians have learned already empathy, respect and dignity for the patient even if only as a pseudo form.

    I'd focus on the clinician with regards to how they approach the patient.

    With disbelief, prejudice, hubris. I'm not sure that dignity, respect and empathy completely rule out continuing to think that way. Anyway, health care providers are only approaching patients how they've been trained to (for the most part). And the worst offenders currently are the BPS believers creating a toxic attitude toward patients by holding on to their precious research that can never not be anything but disbelief, prejudice and hubris.

    This focus on the patient makes sense when they don't want to look too close at the real attitudes blocking any useful interaction with the patient.
    bobbler, Trish, shak8 and 5 others like this.
  4. Keela Too

    Keela Too Senior Member (Voting Rights)

    From the blurb above:

    I would argue that patients “are shamed” by some professionals, but they don’t necessarily feel a “sense of shame” themselves. I didn’t. I felt frustrated by the lack of understanding, and the fact that certain parties thought I should feel ashamed. Different emphasis I think.
    bobbler, Sarah94, MEMarge and 14 others like this.
  5. JemPD

    JemPD Senior Member (Voting Rights)

    Edit, cross posted with @Keela Too :) who said it rather more politely lol

    err, excuse me, but you're doing it too.

    I dont feel shame when i am dismissed or abused, your contempt doesnt shame me despite the fact that it's supposed to. It hurts yes, it cuts deeply when people think things about you that are profoundly insulting and wrong, but i am not ashamed. I reject your shame you arrogant sod. There are people who should feel ashamed... it aint me, it aint us.

    The reason I want respect and for my ilness to be respected, is so i can get my needs met. It's so i can get the care and support i need, not so i can avoid feeling ashamed of myself.

    The author falls into the same ruddy trap they are about to teach others to avoid... I would suggest that his unconsious beleives that there is a shame involved in having MUS & this is about teaching Drs not to show it. If they didnt believe it they would show it. Change your beliefs from Medically Unexplained Symptoms, to Epistomologically Lacking Medics, and you'll solve the entire problem.

    If there were justice in the world this would be a seminar for patients that Doctors dont yet know how to help, encouraging us not to shame or deride our Doctors for not being able to do what we all wish they could!

    Cheeky sod, a 'uniquely intesne shame' indeed!

    Just No, you're reinforcing the problem. Young children feel shame when they are shamed by their care givers.
    Newsflash!!! I'm not one.... despite the generalised infantilisation of PwME/MUS.
    Sarah94, MEMarge, Hutan and 16 others like this.
  6. Keela Too

    Keela Too Senior Member (Voting Rights)

  7. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Not ashamed, bloody fuming
    MEMarge, Midnattsol, rvallee and 11 others like this.
  8. Keela Too

    Keela Too Senior Member (Voting Rights)

    Is Katharine Cheston on here? Can she perhaps explain this major misunderstanding to the speaker?
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    It looks to me as if Katherine Cheston is the speaker for this piece.
    MEMarge, alktipping, Kitty and 5 others like this.
  10. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    I think it is quite hard to disentangle the consequences of concerted disrespect. If you know that saying you have ME or CFS will cause you to be treated as a hypochondriac or drama queen or someone whose reports about symptoms should not be trusted, then you might be careful who you tell. The basis of that is partly a rational desire to be treated well, or to not have to prove that you are a competent person. But I think it does also create some shame.

    I know I'm not over-stating my symptoms, I know that changing my behaviour or thoughts doesn't fix my illness. But, from a number of frustrating, fruitless and deeply hurtful encounters with doctors (and others, even a hairdresser), I am left with a sense of shame. A combination of circumstances means that I will have to try to get a disability benefit this month, the first time I have had to try to deal with social welfare. I'm pretty sure I shall be approaching that process with more shame than if I had a multiple sclerosis diagnosis. I know I shouldn't feel shame and I try not to, and I certainly try not to show it, and I do feel anger and frustration too.

    When I try to be proactive and reject the disrespect, even if I do it really politely, I am aware that it makes me look exactly like the prejudiced view so many people hold of a person with ME/CFS. And I sometimes feel ashamed that I am that person who writes the complaining email, and then the followup email...

    I see it in young people with ME/CFS too, some who would often rather be judged lazy or irresponsible than let it be known that they have ME/CFS.

    I don't know, but I reacted differently to the words quoted. Possibly investigations of the impact on people of other forms of prejudice, like racism, might have something useful to say about the effects of concerted disrespect, even on people who rationally know that they have nothing to be ashamed of.
  11. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    I think it depends entirely how you're treated and the age at which you get ill.

    In interactions with healthcare professionals I feel some shame about not having been able to complete my education, be employed and generally having done nothing with my life. I don't feel ashamed of having unexplained symptoms (or at least don't recall feeling that way in a long time). If they don't believe me then that causes irritation and anger but not shame.

    As adolescent I was ashamed in the first years of the illness because I was being treated by everyone as not ill but as misbehaving. There is this strange phenomenon that if you're treated a certain way you end up believing it at least a little.
    Last edited: Nov 8, 2021
    ukxmrv, MEMarge, bobbler and 8 others like this.
  12. Keela Too

    Keela Too Senior Member (Voting Rights)

    Oh! Right! I read it thinking that the bit I quoted was coming from Peter Shaber who I thought was the main speaker at the workshop. Hmmm. Maybe you are right.
    MEMarge, alktipping and Kitty like this.
  13. Keela Too

    Keela Too Senior Member (Voting Rights)

    That might be part of it. I was in my late 40’s when I got ME, and I had no disbelief from my family. So maybe if I’d got ME before my career, and before having my family, and with less understanding from those around me, then maybe I might have found myself being pushed into a position of feeling ashamed of being so ill. I don’t know. But I can see how these things could make quite a difference.
    MEMarge, NelliePledge, Sean and 4 others like this.
  14. Andy

    Andy Committee Member

    Hampshire, UK
    I think shame could be a word to use to describe how I felt when I was younger. I was certainly ashamed that I wasn't able to match the perceived level of effort (achievement, performance, whatever word is most appropriate) of people around me, especially those who I perceived, rightly or wrongly, as people that I should be better than for whatever reason.

    As the years have passed, and I started to understand the actual limitations that I had, that feeling has changed into regret, anger and sadness at lost opportunities that I will never get back, but also pride at having achieved what I've been able to despite the hurdles in the way and knowing that the effort I had to put in to achieve those things was actually far more than most people will actually ever make.
    bobbler, MEMarge, Cheshire and 10 others like this.
  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    full presentations now on youtube


    MEMarge and Hutan like this.
  16. duncan

    duncan Senior Member (Voting Rights)

    I wonder what the proximity of Respect and Shame is to Fear and Loathing. I'd argue a stone's throw.
    bobbler and Arnie Pye like this.
  17. kacheston

    kacheston Established Member

    Sorry to resurrect this thread - I’ve only just come across it, while doing the final edits on the paper that came out of this workshop. (Also apologies in that I've forgotten - again! - how to reply to someone on here so that they might see this - I hoped clicking 'reply' would work!)

    I just wanted to apologise for the way my research came across here - this wasn’t at all what I intended, and I'm really sorry about this. I hoped I could clarify a few points:

    The reason that I am particularly interested in shame is because I want to look at how people with so-called “medically unexplained symptoms” are harmed. (My background is in the humanities and social sciences, so I’m looking at emotional harms - which, of course, occur in addition to physical harms.) There’s a lot of interest at the moment in shame - lots of people are researching the impact of living under shame, stigma, and how painful this can be: how it can lead to poorer health outcomes, for example. So my primary interest isn’t on the emotion of shame (how it feels to be ashamed) - I'm most interested in how shame comes about, how it’s created (and who is creating it, and why). Really, I’m more interested in *shaming* and stigmatisation.

    Essentially I believe that the category of “medically unexplained symptoms” is harmful, and that many of the narratives created around this concept shame and stigmatise those who have to live under these labels. The shame is created by external forces - I don’t believe that there is anything inherently shameful about living with ME or any other condition that some describe as "medically unexplained", and I don’t believe that people with these conditions should feel ashamed. I would, however, argue that arguments (such as by BPS proponents, academics, clinicians) shame patients, and therefore cause them harm. This is not an angle that has been explored before - so, as we know, certain academics can go to the press, claim to have been the victim of vicious / vexatious online attacks, play the victim, etc - because (they say) how can this sort of science cause harm?! Aside, of course, from the physical harm (caused e.g. by GET), I want to also suggest that shaming and stigmatising narratives cause harm in other ways - shaming patients is just one of these. Academia is obsessed with ‘impact’ - academics love to talk about the impact of their work, as if this impact can only be positive. I hope to point out how and why this is wrong.

    I really hope that makes sense - please get in touch if it doesn’t, and if you would like to discuss any of this any further. Feel free to ask any questions below, or to get in touch via Twitter (@kacheston) where my DMs are open. Also happy to provide an email address via some sort of direct message, if this is easier!

    That being said - there's no need to reply! I just couldn't click away from this without writing an explanation (or at least, trying to!) for a hastily-written abstract. (Needless to say, I no longer use this phrasing!)
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    I think it makes sense but I can see how PWME might still find it misses the point.

    The point for me as a medical scientist interested in ME is that the problem is not 'shaming' so much as sheer incompetence and bad manners on the part of those claiming to know how to treat ME or 'MUS'. The problem is not how these poor people are feeling - although they are angry and rightly so - it is that they are STILL ILL.

    Or to put it another way maybe it is time people stopped 'researching the impact of living under shame' and started researching why it is that a group of health of health professionals are so bad at their job and adding insult to injury. Researching shame sounds like just more paternalism - as if shame was a significant part of the problem because it 'makes illness worse'. This is the same psychosocial nonsense that created the anger in the first place isn't it?

    I do appreciate your desire to get this right though!
    Last edited: Jul 21, 2022
    ukxmrv, FMMM1, EzzieD and 17 others like this.
  19. kacheston

    kacheston Established Member


    I completely, wholeheartedly agree that the problem is not how pwME (or pw"MUS") are feeling - it is that they are still ill. I guess, at it's heart, I want to know *why* this is - why there has been so little progress, such appalling little interest, why the academic community has tolerated such poor science and showed such little curiosity.

    I would say that I am researching why a group of health professionals added insult to injury through, amongst other things, shaming patients - why such poor science was tolerated, what might have led us to this point, why structures within e.g. the academic community did not prevent this, and how the system needs to change so as it could be prevented in future. It's why I'm focusing on so-called "MUS" (not, as I hope is obvious, a term I employ uncritically!) rather than e.g. ME - because I think second order change is necessary (i.e. not just plucking diagnoses from the MUS bucket when biomarkers etc appear, as they will - but a critique of the category itself).

    I absolutely do see why researching shame sounds like just more paternalism. I'm still writing up, but I hope that I can prove otherwise when I have more lengthy publications to show! And, in the meantime, welcome any and all questions and discussion - thanks for your comment!
    oldtimer, EzzieD, Sarah94 and 10 others like this.
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    It is actually quite simple, I think. I worked amongst people interested in the MUS dustbin all my life. I didn't get involved because there were no leads that looked as if one could make progress on. The problem looked too difficult. So the field was taken over by empty vessels making noise.

    Why would you want to prove that researching shame is not just paternalism, if it probably is? Research isn't about lengthy publications proving what we want to prove. It is about finding out what is the case, surely?

    If the answer to why people are being shamed is that health care professionals are incompetent and lacking in the very human insight they purport to be experts in that gets hard to write up. Unless you get involved in niche journalism maybe.
    FMMM1, hibiscuswahine, EzzieD and 8 others like this.

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