Listen to M.E: Why Medicine Needs Feminism
By Rose Heffernan
I was 9 years old when my Mam told me she had been diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). We were walking to my favourite bookshop, and my Mam told me she was going to look for a book about this illness she had just been diagnosed with. As a child, I thought nothing of it. She seemed fine to me, and I don’t think she fully realised either how much this little-known illness was going to change our lives.
ME/CFS is a chronic illness that has no cure and very little medical understanding of its origins. Its main symptom is extreme tiredness, but other symptoms include confusion, light and sound sensitivity, nausea, sore joints, headaches as well as a weakened immune system, leaving those with ME/CFS very susceptible to other illnesses. The tiredness experienced by those living with ME/CFS is nearly impossible to explain; something as little as cutting the grass could now leave my Mam in bed for days. ME/CFS can be characterised as a dynamic disability, which means that the nature of the illness fluctuates. For example, some days my Mam cannot get out of bed, but other days she can drive us to the shops or go for a long walk. Many people living with ME/CFS cannot leave their beds at all due to permanent exhaustion. One of the most frustrating parts of the illness is the lack of awareness around it. Often when explaining to people that my Mam cannot work, I say she has M.E., and I am often met with a blank expression or ‘oh but you can treat that, can’t you?’
Recently I have been reflecting on why the answer to that question is ‘no, there is no treatment proven to work.’ There has been a focus on long COVID-19 in the media, a horrific aftermath of the COVID-19 infection that shares many of the same symptoms and could even result in ME/CFS. My Mam pointed out to me that since a lot of work and public attention is on long COVID-19 at the minute, maybe ME/CFS will end up getting the much needed research it deserves. Yet it should not take a global pandemic for such a debilitating illness to be taken seriously. I think part of this lack of awareness around ME/CFS can be explained by the theory of androcentric medicine.
As much as we would like to think medicine is based solidly on science and facts, this is simply not the case. Like all other aspects of human existence, medicine has developed over time and has been severely impacted by social and political factors. Androcentric medicine is the concept that medicine today is based on an ‘archetypical man’. Medicine has developed in a way that places care and concern on men’s illnesses and pain, whereas anything experienced by women was deemed to be ‘hysteria’ or an issue with their wombs. Not only is this focus on reproductive organs harmful to gender nonconforming, transgender and nonbinary people today, but racism is also a prevalent force as androcentric medicine assumes the archetypical white man.
For an excellent overview and application of androcentric medicine see Unwell Women.
One of the main symptoms of androcentric medicine we can see in the medical industry today is the lack of understanding relating to women’s pain or around illnesses that predominantly affect women. ME/CFS affects women to men at the ratio of 4:1, and has been considered a psychological disorder by the medical community for most of time. It was only in 2015 that the Institute of Medicine corrected that ME/CFS is “a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” Yet this was not always the case: historical research shows ME/CFS has been around for a long time yet there has been no move to implement physical markers for diagnosis. In fact, in the 1800s, ME/CFS symptoms were called ‘neurasthenia’ and were believed to be a physical neurological disease. This was because it was largely seen to be affecting men at this time. But with the rise of psychiatry in the 1900s and predominance of women with the symptoms, the medical consensus shifted to that of a psychological, not physical disorder. Particularly damning is a 1970s article with no sound scientific analysis that callously deemed people with ME/CFS to be experiencing ‘mass hysteria’.
Medicine needs a feminist approach that challenges the androcentric perspective and puts the historical experiences of women in all their diversity at the forefront.
This is why medicine needs feminism. The lack of care around ME/CFS is harmful — the National Institutes of Health applies a disproportionate share of its resources to diseases that affect primarily men, at the expense of those that affect primarily women. Framing of ME/CFS in psychiatric terms has led to its treatment with medicines for psychiatric disorders. Additionally many living with ME/CFS are treated badly by their doctors or seek unorthodox forms of medicine as a result of not being listened to by the medical community. Medicine needs a feminist approach that challenges this androcentric perspective and puts the historical experiences of women in all their diversity at the forefront. It is not just ME/CFS, but other conditions such as endometriosis and multiple sclerosis that are also not treated effectively due to androcentric medicine. A feminist approach to medicine would allow for more funding, research and understanding around these conditions, as well as a better understanding of inequality which would, in turn, provide healthier outcomes for men, women and gender nonconforming people living with these conditions.
In researching for this piece I had the pleasure of talking to members of the ME/CFS community, who unfortunately have experienced many of the issues explained by androcentric medicine. Some had undergone private tests to try and get their symptoms taken seriously, others got a diagnosis of ME/CFS after doctors could find ‘no other explanation’ for their symptoms. Many had experienced derision from medical professionals or were made to feel their symptoms were not real, or they were not not listened to.
The process of being diagnosed with ME/CFS can be incredibly traumatic (imagine experiencing a whole range of painful physical symptoms and not having doctors believe you?), and then once a diagnosis is achieved there is little to no support or help offered. We need policies that rectify this historical injustice by increasing funding and research for conditions such as ME/CFS, Endometriosis or Multiple Sclerosis. We need training for healthcare professionals to reflect on their own gender and racial biases so they can better respond to patients. And we need the public, the media, doctors and politicians to listen, believe and share all the stories that prove androcentric medicine is real and harmful.
Medicine, the media and other social institutions’ portrayal of ME/CFS reinforces negative stereotypes, and often places blame and shame on those living with the illness. The ME/CFS community has consistently challenged this negative narrative and lobbied for increased funding and research. However, living with ME/CFS is exhausting and the onus should not be on this community to constantly fight to be listened to. The COVID-19 pandemic has drastically altered our idea of medicine and health. The years that follow should be space for reflection and reform, where we can work together internationally to address the inequalities inherent in medicine today. It is time for a feminist approach to medicine.
Please check out the incredible work of The ME Association, Action for ME and the #MilionsMissing campaign. Additionally you can sign this petition which demands UK governments commit the same dedication to funding and research for ME/CFS as they have for long COVID-19. For more information from those living with ME/CFS, see Jennifer Brea’s Ted Talk and the Unrest Documentary on Netflix.
Thank you to the inspiring members of the ME/CFS community who took time to share their experiences and resources with me. This piece is dedicated to my wonderful Mam who raised me to be the feminist I am today.
About the author
Rose graduated from University of Glasgow in 2020 with a first class honours in Politics and Central Eastern European Studies. Since then she has worked at Women Engage for a Common Future, an ecofeminist organisation where she has engaged in advocacy and research. Rose is learning Russian in her spare time with the hopes of living there one day. You can follow her on Twitter at @roseheffernan9
