Women are supposed to be beautiful and shut up, even in this day and age. I can tell: with regard to my troublesome health, health care practitioners almost made me lose my sense of human worth. As a chronically ill woman, I felt like a nuisance for asking for medical attention. I felt like a freak for failing to recover while they kept finding nothing wrong with me.

Thankfully, Laurie Penny wrote Bitch Doctrine, a book “about control and contested bodies (..), about gender and power and violence.” (p. 1) When women speak up they are considered provocative and disagreeable, but Penny divulges the norm that women don’t deserve power or even autonomy.

This book is for anyone who is part of a marginalised group, but especially for those women who dare to speak up and are subsequently called a bitch: “I called this book Bitch Doctrine because when I present what seem to me quite logical, reasonable arguments for social change, I find myself called a bitch, and worse.” (p. 6) Although there are no specific essays on disability and the predicaments disabled people are facing, as a white, chronically ill, cis woman I can thoroughly connect with the notion of being left out and belittled. Often this is the way to maintain the status quo, a so-called equilibrium, “where men have more social power than women.” (p. 17)

At 27 I got ill with an unknown viral infection and so far have not yet recovered. Eventually, I was diagnosed with myalgic encephalomyelitis, an enigmatic illness that conspicuously seems to affect three to four times more women than men. Extreme fatigue is a well known characteristic of ME, but lots of patients are also troubled by neurological and gastrointestinal symptoms, sleeping and blood flow problems, and a massive energy crash after minor exertion, also known as post-exertional malaise. One can be diagnosed with ME if these symptoms last longer than six months

As if dealing with this misery isn’t bad enough, a lot of ME patients have to deal with the impudence of the health care as well. Impudence, yes, because I cannot believe, after being ill for twelve years, that I am still arguing with doctors regarding my health. Let’s rephrase that; my lack of well-being.

“To them I seemed nothing but an uppity woman.”

Hoping to find relief for my many symptoms, I bumped into more than one self-satisfied table-drumming doctor. To them I seemed nothing but an uppity woman. Inconsiderate to other ailments, one even told me to be patient, because chronic fatigue often resolves over time. This was said nine years ago and left me wondering – yet again – if I was anomalous for failing to recover.

The majority of consulted specialists sent me home empty-handed, their tests ruling out serious deficiencies. The absence of proof is invariably proof of absence, I presume they believe. Is feeling dreadful enough to spend the biggest part of the day on the sofa or in bed not serious? Somehow that seems to be the core of the problem. All I need to do, is move my butt from the sofa, and cognitive behavioural therapy is just the thing for that. Indeed, completely ignoring the suspected immune-related origin of their suffering, ME patients in general are to be treated with talk therapy. My contested body should be on a psychiatrist’s sofa.

During the first women’s liberation movement in the 19th and early 20th century, women who were rebellious, acting out or refusing to submit to men, were conveniently labelled deranged, as Penny gives voice to the suffragette movement in her essay ‘The Emily Davis Blues.’ The fight is continued today by women who want to be treated as rational human beings. Amongst them are women diagnosed with ME, who have been called hysterical so many times. An invisible illness seems invalid, and this painfully resembles how women were declared insane in days gone by. In other words: madness is political. The suffragettes were called too emotional to vote, and ME patients are called too emotional to be investigated.

Those specialists may not realize, but myalgic encephalomyelitis is a systemic disease that is marked by exertion intolerance and “can cause significant impairment and disability”, as stated by the Institute of Medicine in 2015. ME research is seriously underfunded by most governments worldwide, or ‘under-appreciated according to Ian Lipkin (M.D. Center for infection and Immunity, Columbia University).

“Undermining women’s sense of human worth is symptomatic of a society in which women are not as worthy as the other half of the population.”

Being under-appreciated is one of the reasons I have moments of doubt. Doubt that I am worth investigating or that my illness is relevant. Doubt that I – as a person, more than just a stack of symptoms – matter to the world that keeps turning while health care practitioners turn their back on me.

In this day and age, even in Western society, undermining women’s sense of human worth is symptomatic of a society in which women are not as worthy as the other half of the population. Reading Bitch Doctrine made me realise, ultimately, that there will always be something wrong with me. Being ill is just extra fuel to that same fire. So I will happily call myself a bitch, a chronic bitch. Let me be uppity for life.

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Images courtesy of Bloomsbury Publishing.

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