Why the feminist practice of embodied knowledge is vital for people living with chronic illness
Without incorporating the embodied knowledge of patients, research findings risk misrepresenting and in worst case stigmatising those they are trying to understand.
I’ve been wanting to make this blog more accessible for a long time. I know a lot of you (including myself, actually) have trouble reading long-form content. I tried recording a voiceover, but I got through two paragraphs and lost my voice and felt sick. So I’m not going to do that. Instead, I found a programme that does AI voiceovers in a very realistic way. It’s right above here. Please let me know how it works. Especially let me know if you want more pauses. There are still a few kinks I need to work out: It says ‘me slash c.f.s’ instead of ‘M.E.C.F.S’ and ‘me’ instead of ‘M.E’ and so forth. I’ll get these kinks fixed for next time. Let’s begin…
As a political scientist with a penchant for sociology I have always known how important embodied knowledge is for how we understand and thereby include marginalised groups of people.
Knowledge is not solely intellectual, as we are often taught in our western patriarchal societies. Knowledge is also rooted in our lived experience, our emotions and our experience of our physical bodies. This is what feminists call embodied knowledge.
When I was doing research for my Masters thesis on women living with HIV/AIDS in Kenya it became clear to me that health policies were at the best ineffective, and at the worst, harmful and stigmatising when the embodied knowledge of those the policies were trying to help were left out.
When I talked to officials working within health about this I often got the sense (some even said this out loud) that they, as educated individuals, knew better than those poor people in distress. They had read the research so they had a bigger picture than those whose bodies they were trying to help. They may have had knowledge that patients didn’t, but patients have knowledge that an outsider, no matter how much they study their subjects, will never have.
Without incorporating the embodied knowledge of patients, the research findings risk misrepresenting and in worst case stigmatising those they are trying to understand.
Stigma occurs when the story of those with lived experience differs from the story being told — and when this ‘told story’ devalues their identity. That’s why it’s important to listen to those with lived experience.
As someone living with ME/CFS, one of the most misunderstood and greatly stigmatised illnesses of this and the last century, I have felt on my own body the consequences of when researchers and scientists do not see the value of embodied knowledge, and when they don’t use it to form their understanding of patients. In fact, I would dare to say that most people living with a stigmatised illness will have felt this on their own bodies.
Women, people of colour, trans people, non-binary and gender nonconforming people’s lived experience and their embodied knowledge has historically (and still presently) been left out, downplayed or directly dismissed in medical research.
The history of ME/CFS is a classic example of when embodied knowledge is dismissed, and where gender stereotypes have played a decisive role (instead of embodied knowledge) in the perception of the disease and the subsequent direction of research:
In 1970, two male psychiatrists, McEvedy and Beard, published an article in the British Medical Journal concluding that the ME outbreak at the Royal Free Hospital in 1955 was really just hysteria — because the majority of those affected were young women. The psychiatrists had not spoken to a single patient — not even those who were still ill 15 years later.
Despite serious methodological errors, the article met very little criticism from the medical world, and thus further research into the neurological and immunological aspects of the disease were suppressed.
This led to several decades worth of psychological and behavioral research into ME (as opposed to biomedical) — most of it heavily criticized and full of methodological errors.
The psychological and behavioural research — far removed from embodied knowledge of patients living with the disease — has brought about sexist (and harmful) theories such as:
Women make themselves sick because they thrive in a ‘sick role' so they can have a break from modern life.
Patients exaggerate their symptoms to get pity and social benefits.
Certain personality traits make women vulnerable to the disease. These theories are often contradictory, such as patients having a perfectionist personality and wanting to control everything in their lives, and the opposite: the neurotic, anxious personality that lacks internal control mechanisms.
These gender stereotypical theories, which various studies have disproved, have contributed to the debilitating stigma that we ME patients (and now Long Covid) still fight against and continue to encounter in the social and health services.
Plenty of examples where embodied knowledge was dismissed or not taken into account in the first place can be found when looking at other diseases such as endometriosis, Long Covid, fibromyalgia and other illnesses disproportionately affecting women.
If embodied knowledge had been taken seriously, the theories about ME/CFS would look much different:
Researchers would know that we do not thrive in a ‘sick role’, but that rest is important to manage our illness, they would know that we often downplay our symptoms so as not to make able-bodied people uncomfortable, and that we need social benefits in order to survive, not for the fun of it. They would also know that our character and personality have nothing to do with the cause of our diseases, but that our personalities have to change in order to manage the illness (for example becoming more introvert and asocial), or that our mental health suffers as a consequence (not a cause) of the illness and of not being understood.
Embodied knowledge emphasizes the importance of acknowledging and valuing diverse perspectives and experiences, especially those shaped by gender, race, class, disability and other intersecting factors.
People of colour are often left out of research studies completely, which enforces stereotypical and stigmatising thinking: Some studies point to false and racist beliefs held by white doctors that Black people biologically experience less pain and are more ‘thick-skinned’.
The consequence: People of colour do not receive the same standard of care as white people. A meta analysis of over 20 years of accumulated evidence concluded that Black and Hispanic patients in the US were less likely than white patients to receive pain medication. A similar analysis conducted years later came up with the same conclusion.
According to a 2021 survey, a staggering 71% of Black women between the age of 18-49 report having had negative experiences with health care.
In Denmark, doctors have for decades used the highly racist and stigmatising term ‘ethnic pain’ to describe the pain of people of colour. Doctors using this term often attribute the patients’ pain to something socio-psychological like ‘culture shock’ or emotional overreaction and hysteria. It is only recently that the Danish media has called doctors out on this.
from wrote about a new study from Liverpool University that “provides new evidence of the extraordinary disregard within the medical system for women, trans men, non-binary and gender nonconforming people with energy limiting conditions (ELCs).” Katz cites how 75% of respondents had felt disbelieved by medical health providers.
The concept of embodied knowledge challenges traditional forms of knowledge that most likely has excluded or marginalized certain groups. By recognizing the embodied knowledge of individuals, we validate diverse experiences and promote a more inclusive and equitable understanding of the world. It contributes to breaking down stereotypes and stigmas and amplifying voices that have been historically marginalized.
Embodied knowledge sheds light on the day-to-day challenges faced by individuals with chronic illnesses. This insight is essential for healthcare providers, caregivers, and policymakers to develop more patient-centered approaches that improve the overall quality of life for those navigating chronic illnesses. This feminist practice of embodied knowledge is vital to people living with chronic illnesses.
Tell me…
What knowledge do you feel patients have that doctors can never have?
What would you like your doctor to know about your illness?
How can doctors become more aware of patients’ embodied knowledge?
Let me know in the comments below.
Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.
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We have lived experience, insight and understanding to our condition that doctors will never gain access to through medical training as it stands to operate from right now. Where those of us who have researched our disease to the extent you and I have, learnt to advocate for ourselves, combined with making changes, doing the deep dark inner work of healing - that makes us very powerful and knowledgeable indeed. It’s only us who can uncover the pitfalls, keep adjusting our sails and navigate our way forward through the turbulent seas of the vast ocean. Surely, we are in places and spaces no man has ever been before? Medically trained or otherwise.
There is a real need for doctors (and all collectively) to become aware of and understand that we can heal ourselves and that it is ok to feel how we feel. We are capable of feeling pain, disappointment, sadness and grief (& all manner and range of emotions). No one told me that you can heal a broken heart. Yet when I look back at this one thing in my life and see what a difference that would have made to what came next…