About a year ago, I came home from an appointment with a new consultant gynaecologist and was frustrated. I said to my partner, “my doctor doesn’t know what he is talking about…I know my body, and this is not normal”. To more than one doctor, I had described symptoms, as well as my family history, which I knew to be associated with endometriosis. And more than one doctor had dismissed it, telling me to stop worrying. It turns out I was right about endometriosis – I was diagnosed about six months later.
As someone who researches the media’s role in driving populism, I worry about the implications of distrust in experts – promoted widely online – for the health of our democracies. I am also critical of the so-called ‘anti-vax’ movement and fear the danger to public health. But something in how I described my experience of endometriosis echoed tropes often used by those who do not trust medical professionals in other contexts. US-American television host Jenny McCarthy infamously said – when asked about the science on vaccines – “My science is [my son], and he’s at home…that’s my science.”
Perhaps something in my experience of endometriosis could help uncover some of the dynamics behind post-truth movements. I am not saying that people with endometriosis who are dismissed by their doctors will somehow automatically adopt anti-vaccine beliefs. But endometriosis is one of the most common gynaecological diseases, affecting an estimated 1 in 10 cis women, trans men and non-binary people with uteruses. It is also one of the most under-diagnosed – currently taking an average of 7.5 years from onset of symptoms. Social science research into endometriosis could us develop a better understanding of how negative experiences of healthcare feed distrust in doctors and interact with other factors that contribute to the post-truth climate, and populist trends more broadly.
Disempowerment and endometriosis
Poor treatment and diagnosis of endometriosis disempowers. According to author Maya Dusenbery, two problems lead to inadequate care for women. The first is a ‘knowledge gap’: doctors know less about female bodies and health problems than male ones. Despite society’s obsession with child-bearing, medical research into female reproductive health is chronically underfunded; we know very little about endometriosis because it hasn’t been considered important enough to be studied.
The second is a ‘trust gap’, meaning doctors are less likely to trust female patients than they are male patients. People with endometriosis symptoms are consistently dismissed and disbelieved by medical professionals – what Andrew Reid calls testimonial injustice [insert link]. They report doctors prioritising their fertility over their quality of life and being told their pain is a normal part of menstruation. There are also racial disparities: endometriosis diagnosed in Black women is more advanced and severe than in White women, suggesting more significant delays in diagnosis. Trans men face their own difficulties in accessing treatment in ‘female spaces’ for a ‘female disease’.
There are serious consequences of the failure to diagnose an often debilitating condition. Inadequate treatment of endometriosis negatively impacts on quality of life: on work, education, and relationships, as Victoria Williams. But it also deprives people of agency. Stella Bullo finds that women with endometriosis felt disempowered because of the continuous battle to be believed. This mirrors experiences reported by non-vaccinating parents of being dismissed by doctors when expressing concerns about their child’s health following a vaccination.
These examples show that how we deal with people’s subjective experiences and knowledge of their own and their children’s bodies matters for trust in medical professionals. The risk is that in the search for agency, through a desire to reclaim power lost through their interactions with doctors, they might be led to alternative sources of support, treatments and potentially troubling conclusions.
Disinformation and populist movements
The case of endometriosis offers an opportunity to
nderstand the potential impact of negative experiences of healthcare in interpreting disinformation. Pseudo-science on social media is widespread, promoted by the highly lucrative ‘wellness industry’ offering easy solutions to problems that rest on conspiracy theories such as the supposed negative health effects of 5G (which we know to be safe), the idea that ‘Big Pharma’ is suppressing natural cures for cancer, and of course the widely discredited link between vaccines and autism. The wellness industry is assisted by a slew of celebrities who use their platforms to promote at best unproven alternative therapies.
Many target gynaecological issues: Gwyneth Paltrow’s Goop, for example, was sued for selling ‘vaginal eggs’ that supposedly corrected hormone imbalances and regulated menstrual cycles. It is easy to go down this alternative rabbit hole: searching under the hashtag #endometriosis on Instagram immediately led to an acupuncture ‘doctor’ warning of health risks of the contraceptive pill, often the first line of treatment for endometriosis. The Endometriosis Foundation of America argues those with endometriosis are vulnerable to disinformation in their search for validation. Women report turning to natural or alternative treatments in desperation.
Not only do such platforms monetise health anxieties while encouraging those with serious health problems to eschew medical help, they may also have wider consequences for the health of democracy. Populist politicians exploit fears and legitimate concerns about healthcare. Support for populist movements is in part driven by a distrust not just in politicians, but also public authorities, scientists and doctors. Vaccine-hesitancy was positively associated with support for populist parties in the 2014 European Parliament election. Such parties have stoked anti-vaccine fears, most notably in Italy following the introduction of mandatory vaccinations. As Żuk and Żuk argue in their study of anti-vaccine discourse and right-wing populism in Poland, this phenomenon is part of the wider populist climate that draws binaries between ‘the enlightenment and counter-enlightenment’ and ‘universal knowledge and national particularisms’.
Populist discourse also exploits general feelings of distrust in mainstream medicine and concerns about healthcare provision. One example is the controversy surrounding the case of terminally ill baby Charlie Gard. In their defence of his parents’ right to decide his treatment, social media users adopted populist rhetoric including a dismissal of medical expertise in favour of ‘common sense’. This was given legitimacy by Nigel Farage, Donald Trump and others. In the UK, concern about an underfunded NHS drove support for the campaign to Leave the EU and provided ‘fertile ground’ for populist anti-immigration discourse. Elsewhere in Europe, the Bavarian branch of the far-right Alternative for Germany (AfD) calls for action targeting pharmaceutical industry lobbying and research into the health risks of 5G.
A feminist response to post-truth?
Inadequate treatment for conditions like endometriosis not only has serious consequences for health and quality of life. It also disempowers, driving people to find agency in online communities and disinformation. Furthermore, populist movements exploit distrust in doctors, as part of a wider struggle of ‘ordinary people’ against the ‘corrupt elite’. Yet, we know very little about the relationship between negative experiences of healthcare and susceptibility to populist rhetoric.
This demonstrates the problematic response to the so-called ‘post-truth’ era. Usually, post-truth claims are countered with calls to trust in the ‘objectivity’ of medicine and scientific research. Such calls allude to traditional natural science understandings of objectivity in which scientists are neutral, detached observers who can and should remove values and normative goals from their work. This view of objectivity has been criticised by feminists as highly masculine, resting on the colonial binary of the ‘rational man’ and ‘irrational woman’. This binary also underpins the common assumption that endometriosis pain is psychological.
But the case of endometriosis shows that doctors and medical scientists are not neutral observers even if they claim to be. Instead, feminist standpoint theorists argue that knowledge is always partial. As in Sandra Harding’s concept of ‘strong objectivity’, considering people’s differing perspectives based on their relative position in social hierarches of power produces a more complete picture. In particular, as Donna Haraway notes, the marginalized can offer a ‘critical insight’ into issues to which we might not otherwise have access.
Just as proponents of post-truth are often given a credibility and authority based on their gender, race and class privilege, so are people disbelieved because of their lack of it. Being believed when we testify to our symptoms without ‘observable’ evidence is, as Tendayi Bloom argues, a privilege that is deeply gendered, racialized and classed. Being believed is important not just because it empowers us. It is important because subjective knowledge of our bodies matters. If somebody who enjoys relative privilege reports their subjective experience, it is more likely to be treated as part of their objective reality regardless of whether there is ‘observable evidence’.
This is not to say, feminist standpoint theorists argue, that the patient is always right, or that we can disavow the need for robust, objective knowledge (i.e., this doesn’t mean anti-vaxxers are right about vaccine safety). But taking seriously people’s testimonies of their health may help doctors compile a more complete picture of underlying conditions. And as academics, we might get a more complete understanding of medical distrust, and indeed post-truth and medical populism, if we seek to understand the experiences of those most marginalized in healthcare.
Charlotte Galpin is Lecturer in German and European Politics at the University of Birmingham. Her research is concerned with European identities, EU citizenship, Euroscepticism and the European public sphere. She is particularly interested in the relationship between the media and EU legitimacy.