Spoiler Alerts –
The Stranger (TV show)
Please Read this Leaflet Carefully, Karen Havelin (novel)
House MD (TV show)
New Amsterdam (TV show)
As a woman with complex, rarely diagnosed illnesses, I am no stranger to the phrase ‘it’s all in your head.’ I have heard it directed at me from frustrated doctors. I have heard of it second-hand appearing in conversations about me between concerned family members. I have seen it mentioned in numerous illness blogs, podcasts, memoirs, and on social media. I have heard about similar run-ins with these words by friends with chronic illness and I have seen it told and retold across medical TV dramas, in a particularly vicious brand of, ‘never trust the sick, especially the undiagnosed or incurable.’
Unhelpful Narratives of Illness
During lockdown, my partner and I have been watching a lot of TV. We were enjoying The Stranger on Netflix until Episode 5 when we shared a familiar look of ‘oh for fuck sake, they ruined it.’ A look we often share when a series or film walks into ableist or damaging tropes of illness and disability. As soon as the sick teenager Olivia was introduced early on in the show, my worries about how she would be represented were stoked. It’s uncommon to have a chronically ill character in popular culture stories for representation alone, usually, it is used as a narrative device. As it dawned on us that it was her mother making her ill and this was yet another Munchausen’s by proxy narrative, my fears were realised and the show had not only lost us but thoroughly pissed us off.
I have Ehlers-Danlos Syndrome (EDS) and parents of children with EDS are falsely accused of Munchausen’s by proxy, fabricated induced illness (FII), or physical child abuse regularly. Numerous advocacy groups exist to assist parents with false allegations of this kind, as it is such a widespread issue. So widespread that the EDS Society website has a section dedicated to it. A family member of mine is training to be a solicitor and part of her training includes studying false allegations of parental abuse due to EDS; a sign that at least in a legal context the issue is beginning to get recognition.
EDS is such a poorly understood, underfunded, and misrepresented condition that children and adults often go years if not decades without a diagnosis or correct treatment. This is alongside the trauma of potentially being taken out of their parent’s care. Popular culture does not reflect those narratives but is laden with stories of ‘fake’ illness, particularly concerning women and girls.
Too Young to be Sick?
In Karen Havelin’s novel, Please Read This Leaflet Carefully, the protagonist, whilst living in Norway with undiagnosed Endometriosis, is allocated sick leave by their doctor. The musing of Havelin’s character identifies one of the common features of this deeply embedded cultural idea that when a young woman is ill, ‘it’s all in her head’; that there is an age limit on illness. It is easier for the doctor to convince the authority figures, namely other physicians, that a young woman has a psychosomatic illness, rather than Endometriosis, a condition that is estimated to affect 1 in 10 women of reproductive age.
The argument she invokes is that sickness does not exist in younger people. Ironically, the common condition she has affects women and girls of reproductive age, with most girls getting their period between 10 and 15. This assumption speaks volumes about historic and current sexism in healthcare that has left women’s health so far behind. [For more on this read, Aby Norman’s Ask Me About my Uterus. Part memoir, part historical exploration of how women’s health has been let down, tracing the history of women’s exclusion from medical research and perceptions of women’s pain.]
6 in 10 adults in the US have a chronic illness and it is the leading cause of death and disability. As explored by Laurie Edwards in her book, In The Kingdom of the Sick: A Social History of Chronic Illness in America, the rise of chronic illness, particularly in young adults has emerged due to medicine’s success. People are living longer, the infant mortality rate has plummeted, and our success in treating infectious disease and in prolonging life has meant more of us are able to live with our illnesses. So, the idea that anyone is too young to get ill is frankly bollocks.
In 1951 Talcott Parsons, regrettably one of the most influential American sociologists of the twentieth century published The Social System. A conservative text which claims to analyse a variety of social systems, including ‘Modern Medical Practice,’ Parsons’ outlines the role of the sick and the physician. The sick person is a deviant and the physician, endowed with pristine rationality, is the vital agent of social control entrusted with authority over the sick subject. In the memoir, Constellations: Reflections from Life, Sinéad Gleeson, a lifelong patient notes this imbalance in the ‘doctor-patient relationship’ and the sense of powerlessness she feels in her sick role; ‘The patient is never in charge. The kingdom of the sick is not a democracy.’
Significantly, Parsons believed that we are all indebted to society. Throughout childhood, we rack up a sizeable debt to society and as adults, we must pay back this debt by working, earning, and being ‘contributing’ members of society. If we become ill, we enter the ‘Sick Role’, which whilst being a deviation, entitles us to some concessions, such as a break in our work, our studies, or what he terms ‘normal activity’. However, in return, the sick person must submit entirely to the doctor in order to get better, which must be the only goal for the sick person.
Therefore, this idea of being too young to be sick as viewed through Parsons’ unfortunately ubiquitous framework is not merely the common presumption that illness only affects the old, but rather, that your debt to society is still too great. Simply put; as a young individual, you haven’t earned the right to be sick. Although this idea did not begin with Parsons, his influence helped disseminate it more widely into the structures of our society and the realm of medicine, both reflecting and shaping the dominant western cultural understandings and expectations of illness.
Stories of the Wounded
In The Wounded Storyteller, academic Arthur W. Frank outlined the various narratives stories of sickness often fall into based on his extensive interviews with other sick people. The most commonly seen in pop culture is ‘The Restitution Narrative’, which is rooted in the patient’s drive to get better and overcome illness, and always privileges the doctor’s ‘heroism.’ Frank argues that Parsons’ ‘Sick Role’ acts as a grand narrative in which these ‘Restitution Narratives’ sprout. He explains that ‘one of the most important aspects of the physician’s performance (according to Parsons) is refusing to “collude” with the patient.’ Therefore, the patient must be viewed at a distance by the physician; they are not viewed as reliable witnesses to their own illness, their input cannot be trusted.
For Parsons, this is because although the sick are not entirely responsible for their sickness, there is, according to him, ‘motivated behaviour’ that leads them towards sickness. Additionally, as opposed to the rational objectivity of the physician, the sick person for Parsons embodies a ‘combination of helplessness, lack of technical competence, and emotional disturbance’. This legacy of distrust is invoked in Porochista Khakpour’s, Sick: A Memoir, when she notes her attempts to speak in the same ‘suspicious dismissive language,’ as her doctors, as she puts it ‘to let them know I was real’ or really sick.
Although in recent years, academic institutions, and to a smaller extent medical institutions have begun rejecting the ‘Sick Role’ as a suitable schema for doctor-patient interactions, it still weighs heavily in our cultural narratives and pop culture. Nowhere is this more apparent than in the archetype of the (usually white, western, and male) heroic doctor, the protagonist of most popular medical dramas. A vivid example of this is the character of Dr Gregory House, in House MD. One of the most popular TV shows worldwide, ranking the most popular in 2008, with an estimated potential of 1.6 billion viewers that year. The narrative of the show always centres House, whilst his patients’ stories and concerns are always secondary to his. His catchline is ‘everyone lies,’ with ‘everyone’ being patients and their families.
When seeking my own diagnosis, the show’s premise was seductive; a group of highly trained doctors, sparing no expense and investing all of their time into getting to the bottom of often rare and complicated illnesses. However, this is the most fanciful part of the show and is constantly let down by how each diagnosis is reached. There is almost no episode in which the patient is not treated with distrust, is not lied to, assaulted, and does not have their informed consent broken – assuming alike to Parsons, that informed consent is not even possible, because of the patient’s supposed medical ignorance.
House’s unethical practice is meant to portray him as an apparent maverick or radical outlier in the world of medicine, rather than what he actually is – a buffoonish embodiment of traits found all too frequently in medical culture; arrogance, paternalism, sexism, racism, ableism, and the propensity to outright dismiss patients’ experiences and voices. This is perhaps the irony of Doctor House.
It is also tempting to give the show credit for the moments of critique aimed at House by the shows more ethical practitioners. However, each critique is undermined by the result; House is almost always right and cures the incurable. In Season 3 Episode 1, House’s theory cures a paralysed man of his paralysis. Throughout, the episode throws doubt on his methods and we are led to believe, this time he is wrong, this time he will be caught out, but in the final moments of the show, the man walks and talks for the first time in eight years. The show could not resist conforming to the restitution narrative and praising the almighty House.
Aside from the capitalist dictum that ‘you’re too young to be sick,’ the ‘Sick Role’ perpetuates the assumption that sickness is temporary or at least should be in a correctly functioning, well-oiled capitalist society. When it is not temporary, but rather chronic, it is viewed as a ghost in the machine, a severe abnormality, a deviance, a virus in the network. However, the doctor who is clearly higher in the moral hierarchy of society than the sick person in Parsons analysis cannot be held responsible for the sick person’s continuing illness. So, as noted by Laurie Edwards, ‘If you cannot cure the patient, then blaming the patient often follows suit.’ Blaming the patient for their illness did not start with Parsons, however, or even with capitalist society, there is a strong tradition of individual fault dating back at least to Classical Antiquity.
The Blame Game
In ‘Ancient Thinkers with Modern Reach’, a chapter of Laurie Edward’s book she explains how ancient healers such as Hippocrates and Plato shifted from the idea that illness was sent to the masses from gods to a more personal view that illness was an imbalance in the individual, namely for Plato a sign of ‘evil’ in the body and soul. This tendency to blame or give negative moral value to sick people was confounded in the Middle Ages, ‘influenced by the spread of Christianity, [which] reflected a spiritual understanding of disease and plague as wrought by sin.’ And of course, has reached its pinnacle as Capitalism has a stronghold worldwide. During the current Coronavirus pandemic, Boris Johnson evoked moralist rhetoric describing Coronavirus as ‘devilish.’ Of course, the results of the virus have been horrific but imbuing the illness itself with some kind of morality eventually comes back on those suffering from an illness, a phenomenon explored by Susan Sontag in her text, Illness as Metaphor.
In the medical TV drama, New Amsterdam, which supposedly shows a kinder, more patient-centred medicine than previous shows, it’s clear that the trope of chronically ill patients being complicit in their illness, specifically female patients, has not left the building (or hospital). In Season 1 Episode 18, a 12-year-old girl with Cystic Fibrosis, an incurable genetic condition, almost dies because she chooses to stop taking her medicine. She does this to prove to her pregnant mother, that when the baby arrives, her mother won’t be able to look after her anymore. Although more subtle than the patients in House, she is portrayed as helpless, distrustful, and willingly ill.
The effect of blaming the sick for their illness and this very current rejection of chronic illness as an accepted position in capitalist society results in dehumanising the sick individual, and alienation from society and our bodies, as we are taught they are wrong. As Gleeson puts it, ‘a patient is not a person,’ or at least not considered one. Khapour likens this alienation from her body to the alienation she feels as an Iranian immigrant in America. Reflecting on the associations between PTSD and chronic illness, something I can attest to, she states ‘the experience of going for years undiagnosed and then misdiagnosed as many like myself do can cause considerable trauma.’
Additionally, there is a justifiable fear in chronic illness communities that seeking help for our mental health further discredits our physical symptoms in the eyes of the physician, leaving many of us in a vicious cycle of mistreatment. Concluding Unrest, a testimonial documentary about her own and others’ experience with ME (Myalgic Encephalomyelitis), Jen Brea says ‘sickness doesn’t terrify me and death doesn’t terrify me, what terrifies me is that you can disappear because someone is telling the wrong story about you.’ Considering 1 in 10 suicides are linked to chronic illness (according to the research project, ‘The Truth About Suicide’) this disappearing from society can become quite literal.
So, Parsons’ legacy of the ‘Sick Role,’ like the doctors he so admires, has become an agent for social control, disseminating throughout our pop culture narratives. We as the chronically ill in this framework, are truly at the bottom of the capitalist hierarchy. Outside of contributing to society, we are the leaky valve, the broken pipe, the puncture in society’s wheels letting all the hard work of good, healthy, contributing workers go to waste. Marta Russell and Keith Rosenthal wrote in Capitalism & Disability, that ‘disability is a socially created category derived from labour relations, a product of the exploitative economic structure of capitalist society’ which ‘creates’ the category and then exploits it.
When opposing the legacy of the ‘Sick Role’ we must oppose our expected roles within Capitalism. As activist and writer, Lola Olufemi does with her assertion that ‘laziness is a radical act’ or as the artist, writer, and activist Johanna Hedva does when they call for a radical community of care in their work Sick Woman Theory: ‘The most anti-capitalist protest is to care for another and to care for yourself.’ A call that has inspired much of my own artwork in an ongoing collaborative creative project ‘Radical Acts of Care.’
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