In today's post, Davy Tennison unpacks the role of medical dislike in the treatment of fibromyalgia patients.
Fibromyalgia (FM) is a chronic
illness primarily of pain and fatigue. The illness is contested and lacks
legitimacy, and FM patients lack credibility in medical spaces. A recent study
in UK FM care found that doctor-patient relationships are often fraught and
unproductive, with patients not believed or listened to (epistemic injustice). FM
patients are also vulnerable to structural epistemic injustice that points to
epistemic dysfunction in the medical system. Essentially: “No one wants to look
after the fibro patient.”
I think this epistemic injustice
can be understood as mediated by dislike. Specifically, a
dislike-disgust-distrust feedback loop that furthers dislike of FM patients and
further undermines their credibility. This feedback loop also invites
moralising attitudes towards patients and punitive reactions that I call Doctor
Knows Best moves.
Dislike-disgust-distrust
feedback loop
Negative reactions from
healthcare providers regarding FM patients include:
“They
should all be shot”, “Let’s hope she doesn’t come back. I can’t stand her,
she’s a fibromyalgic”
“They
are patients… towards whom I feel rejection”, “Oooh how can you stand those
women??”
“I
always have this doubt […] It’s like you want to shake them and say: [pause]
'Snap out of it already! '” These examples display a range of feelings
including dislike, disgust and distrust – but how are they connected?
FM is stereotyped as a women’s
illness so I could talk about cultural and misogynistic, links between women’s
bodies and disgust – but as I don’t want to play into the undue feminisation of
FM, I’ll focus on viewing disgust as the emotion of social rejection. Disgust
reactions change how we view and treat others. And when combined with other
prejudices (such as towards social groups) it can cause us to not only
dehumanize others but see them as immoral. This is where distrust comes
in. People triggered with a disgust reaction have an aversion to those who
violate norms, seeing them as suspicious and untrustworthy.
How are FM patients norm
violators? Briefly, FM patients can’t be cured and seldom get meaningfully
“better” – which denies the doctor the role of healer. The doctor also likely
knows very little about FM, and in fact patients often feel forced into a
“patient expert” role – upending the usual role of who have the epistemic
high-ground in the relationship.
So, FM patients, as norm
violators, are disliked, found disgusting, and moralised against. And that
moralising takes the place of distrusting and disbelieving them (seen as
epistemic injustice). There is a punitive side to disgust, as the motivation to
act morally comes with the motivation to punish those who do not.
These actions are also likely
viewed as moral because in our dislike-disgust-distrust framework, FM patients
are conceptualised as deserving of, or inviting them. In fact, FM stereotypes echo
moralizing sentiments, e.g. views of patients as lazy, malingering,
drug-seekers, etc. Similarly doctors label FM patients in ways that position
them as morally wrong: noncompliant, difficult, heartsink.
I label these
reactions, along with other instances of epistemic injustice faced by FM
patients as Doctor Knows Best moves – and conceptualise them
specifically as tactics of epistemic oppression.
Doctor Knows Best
moves
In “Down
Girl, Down Girl: The Logic of Misogyny” (2017), Kate Manne conceptualises
misogyny as the policing arm of the patriarchy, and describes misogynistic
“Down Girl” moves that serve a punitive, moralising function – shaming women
for perceived moral errors. Within a misogynistic environment Down Girl moves
punish not just the violation of gendered norms, but any well-entrenched social
norm.
A Doctor
Knows Best move is a hostile or dismissive reaction from a doctor to an FM
patient. It’s epistemic injustice, yes, but its more than that. It’s a kneejerk
reaction to protect the epistemic institution of medicine, bolster the doctor’s
position, and put the patient back in their place - which suggests an
underlying, more systemic epistemic dysfunction in medicine.
This plays out in the FM
doctor-patients relationship in ways such as:
Patients
commonly reporting doctors sighing, looking annoyed with them, rolling their
eyes etc.
Doctors try to avoid FM patients
and report referring them away for this reason
On a more structural level,
negative stereotypes and judgements of FM patients are passed down in e.g.
medical schools (via the “hidden curriculum”.
This is a
manifestation of an unjust and broken doctor-patient relationship, and an
epistemic dysfunction in the institution of medicine.
It is an
issue of epistemic injustice, yes, but it manifests as poor treatment of
patients, making it a crucial issue of social injustice for FM patients today.
Further reading:
Kelly, D. R. (2011). Yuck! : the nature and moral
significance of disgust / Daniel Kelly. MIT Press.
Kidd, I. J., & Carel, H.
(2017). Epistemic Injustice and Illness. Journal of Applied Philosophy, 34(2),
172–190. https://doi.org/10.1111/japp.12172
Manne, K. (2017). Down girl : the logic of misogyny / Kate
Manne. Oxford University Press.
http://dx.doi.org/10.1093/oso/9780190604981.001.0001
PACFiND Study: https://www.abdn.ac.uk/iahs/academic/epidemiology/our-research/studies-list/pacfind/
Davy Tennison is a PhD student
in UCL's Science & Technology Studies Department. Their work focuses on
chronic contested illnesses, epistemic injustice in healthcare and the
doctor-patient relationship.
