Staff Blog: International Women’s Day: The sexism that disables many women in the chronic illness community

International Women's Day 2022#BreakTheBias

by Sam Earle

In honour of this year’s International Women’s Day’s theme, #BreakTheBias, I am going to explore a particular kind of bias that affects disabled women: having one’s experiences dismissed by medical professionals.

One of the most common forms of sexist discrimination that I face, as a woman, is not being taken seriously, being dismissed, or not being recognized as an authority – including on those areas about which I have overt specialist knowledge. One such area of specialism is the topic of my PhD. Despite not having any particular knowledge of the topic himself, a senior male professional acquaintance once took the opportunity to publicly belittle me on the grounds that I didn’t understand my work enough to explain it (!). Another area about which I have particular and unique knowledge is my own health – my fibromyalgia and its endless dance of symptoms.

Yet, time and time again, over many years, I have been dismissed and belittled by health care providers. My experience is, sadly, very far from being unusual. Most women that I have spoken to report having experienced something similar, and often more than once. Researchers Havi Carel and Ian Kidd found that patients use online forums to “attest to persistent experiences of feeling ignored, marginalized, or epistemically excluded by health professionals”

For those of us with chronic illnesses like fibromyalgia or ME/CFS, both of which disproportionately affect women more than men (ratios of 9:1 and 3:2, respectively), we are likely to have to face this kind of dismissiveness repeatedly. This is for several reasons: 1) our illnesses are chronic, so they need managing over years and decades; 2) they involve a catalogue of symptoms and several co-morbidities – each of which may require investigation, diagnosis and treatment, and; 3) simply by virtue of being dismissed we are forced to keep trying, very often meeting the same response.

Chronic illnesses like mine, whose symptoms are described as non-specific – and for which no definitive bio-markers have yet been found – are often taken to be psychological and seem to elicit attitudes from medical professionals that sound like contemporary versions of the “hysterical women” trope of a century ago. Indeed, an article in the influential British Medical Journal in 1970 referred to ME as “mass hysteria”, because it was mainly seen in women.

These tropes of the ‘weak-minded’ and delusional female are used as a means to justify dismissing our voices. So, we frequently hear things like, ‘you’re just stressed’, ‘try to relax more’ (remember the infamous ‘calm down dear’?), ‘pull your socks up’, and are plied with antidepressants and ‘treated’ psychiatrically – often before any physical investigations are conducted! This was my experience in the first months of my illness, despite my symptoms being exclusively physiological.

One study from Sweden found that the “tendency among doctors to psychologise patient symptoms…was considered by patients to be condescending and undermining.” Gabrielle Jackson, the author of Pain and Prejudice, notes that women are “more likely to have their physical symptoms ascribed to mental health issues”,

This pattern of medical dismissal, especially of female patients, has come to be known as ‘medical gaslighting’: in which the blanket refusal to acknowledge the legitimacy of the patient’s testimony and the locating of the problem in the minds of the patients serves to suggest that the problem is illusory, that it’s “all in their head”.

Medical gaslighting falls into a broader category, known in philosophical terms as ‘epistemic injustice’. Epistemic injustice refers to the phenomenon of being treated as an untrustworthy and unimportant source of information and knowledge (i.e. thus leading to being dismissed). It is one of the most harmful of weapons of sexism (and oppression, in general), in my view, because it makes itself impossible to argue against – whatever you say will simply not be heeded.

The upshot of epistemic injustice for conditions like mine are that sufferers wait years for a diagnosis; they are scandalously underfunded (for example, fibromyalgia has around 2.5 million sufferers in the UK, but only £3 million in funding, versus rheumatoid arthritis that has 700,000 sufferers in the UK and £223 million in funding, for example); and there are virtually no reasonable accommodations made for us in society – leading to social and economic exclusion.

This doubled-edged exclusion, coupled with extremely debilitating symptoms for which – thanks to the lack of research funding – there are no specific or effective treatments, perhaps account for why quality of life among people with conditions like fibromyalgia and ME,  is so low. One study from 2015, for example, found that quality of life in ME patients was significantly lower compared to 20 other conditions – including, depression, stroke, cancers, COPD, rheumatoid arthritis and diabetes.

However, I would suggest that there is also another reason for such low quality of life: the lived experience of epistemic injustice. In my view, there are very significant impacts on self-esteem and mental health of being routinely dismissed and disregarded. One patient interviewed in a Swedish study claimed that not being believed  “is so hard that it is almost the worst thing”.

Medical gaslighting makes women feel “pretty awful about themselves, even to the point where they begin to no longer trust themselves”.  And Alison Baily suggests that “Epistemic oppression is a cruel thief. It is disorienting, exhausting, and deadly. It triggers anger, anxiety, depression, and resistance. It steals our time, energy, and attention”.

Being recognized as, at the very least, a trustworthy authority on your own experience, would seem to be a minimal requirement for dignity: for dignifying the personhood of the other. Failure to do this sends the message that their personhood is not recognised or valued. Over the years, we internalize these messages, somehow subconsciously believing that we are not worthy of treatment, of reasonable adjustments, of informed family and friends to support us. This means that, as well as being very often too exhausted to fight these battles, we don’t wage them on the grounds that we don’t believe we deserve to win them.

To begin to help address this problem, we are pioneering the Chronic Illness Allies campaign, in the hope of spreading awareness among our potential allies about how to advocate for and support people with chronic illnesses like mine to help #BreakTheBias! Allies are a crucial facet of social justice, precisely because epistemic injustice denies positions of influence to oppressed groups. Furthermore, as columnist George Monbiot notes, “One of the cruel paradoxes of [ME] is that the extreme fatigue it causes undermines patients’ ability to mobilise for better treatment” and this is true a many members of the chronic illness community.

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