According to a nationally representative survey conducted in June 2022 by the Census Bureau and analyzed by the Centers for Disease Control, some 19% of adults in the United States who have contracted Covid-19 experience some form of Long Covid, equivalent to some 7.5% of the U.S. adult population.
Yet in spite of mounting scientific, epidemiological, and clinical evidence of Long Covid’s effect, and the recognition of Long Covid by the World Health Organization and the U.S. National Institutes of Health (NIH), Long Covid patients continue to face various forms of denialism and accusations that Long Covid does not exit. Patients have worked hard to translate their experiences into types of knowledge that are legible to scientists and policymakers, such as studies from the Patient-Led Research Collaborative.
For the past two years, our research team at the Covid-19 and Trust in Science Project (CATS) at the Trust Collaboratory at Columbia University have studied the experiences of Long Covid sufferers. In a recent study published in SSM-Qualitative Research in Health, we report findings from our Fall 2021 survey of social media users who self-identify as individuals with Long Covid in the United States.
It should be noted that our sample is biased. Biased towards those who are more affluent, educated, and liberal, as well as includes more respondents who are white and female (see table 1 of our paper). Because our survey focused on users of social media and targeted online patient communities, our respondents are also understandably more digitally savvy and connected than those who live their lives primarily offline. However, in spite of these various forms of advantages, our respondents still reported experiences with medical professionals and the medical system that was overwhelmingly negative.
What we found was the mobilization of the rhetoric of “gaslighting” to describe the contentious interactions between patients and their medical providers. Similar to previous accounts of contested illnesses, such as chronic fatigue syndrome, fibromyalgia, Lyme disease, and, migraines, Long Covid patients accused their doctors of denying their version of reality by ignoring their symptoms and complaints, attributing the symptoms to anxiety or outright malingering, and doing little to help alleviate their suffering. As with these other examples of contested illnesses, there is a gendered dynamic to these interactions, as most Long Covid patients in our sample who reported such experiences were women.
So how is the rhetoric of medical gaslighting mobilized by Long Covid sufferers?
First, in our survey responses, Long Covid patients pointed to the lack of awareness and dismissal of their condition from their medical providers. As one respondent wrote:
In the beginning, it was terrifying. No one believed or understood that covid lasted longer than 2 weeks and it wasn’t a life-or-death thing. At the most terrifying point of my life I had to fight not just to live but for people to believe that my illness existed let alone to get help… because ‘covid is only respiratory and lasts max 2 weeks.
While this experience of dismissal was particularly prominent for those who developed Long Covid earlier on in the pandemic in 2020, survey respondents who contracted Covid-19 later on in 2021 also reported similar experiences. We also continue to see this rhetoric of gaslighting in popular press today, which suggests that Long Covid patients today continue to face similar experiences.
Second, Long Covid patients pointed to the prolonged diagnostic odysseys associated with obtaining their diagnosis. A respondent summarized this process in these words:
A very long, convoluted journey to a) get a correct diagnosis; b) see many doctors (some horrible gaslighting/some supportive); c) narrow down my medical care team to competent, supportive doctors; d) experiment with various off-label meds to ‘cure’ this illness: e) take each day at a time as more research continues to emerge; f) literally tracking peer-viewed medical research and primary scientific study about my own illness.
Receiving a Long Covid diagnosis thus oftentimes entails multiple tests, referrals to specialists, and self-advocacy. This was, in the U.S. context, also oftentimes costly because of privatized medicine and the reluctance of insurers to pay for “unnecessary” tests. Needless to say, only relatively well-educated and well-off patients could hope to succeed against such odds. As Barker, Whooley, Ahrend, and Greene also observe, medicine’s initial inability to classify and construct a Long Covid diagnosis has to do with its “unwieldy clinical boundaries.”
Third, Long Covid patients have pointed to the lack of treatment options that are available for Long Covid even if they managed to obtain the diagnosis. As one respondent recounts:
I’ve seen a dozen specialists who shrug their shoulders, are dismissive, and say ‘we just don’t know’. They aren’t interested in working with you to truly get you well. They just give you a pill to manage a symptom and send you on your way.
The lack of treatment options for Long Covid has reduced Long Covid patients’ trust in mainstream medicine. Many have turned to online communities to seek out advice from other Long Covid patients for supplements and treatments that they themselves can experiment with. Some are trying alternative forms of medical treatments, while another group of patient activists have recently rallied around the hashtag #TreatLongCovid to point to the lack of urgency from scientists and regulators to develop and test different drugs or treatment options for use with Long Covid.
While our study pointed to the many problems and challenges that Long Covid patients face, we should not discount the agency of patients and patient movements to challenge dominant understandings of their condition. Already, at the behest of patient activists, the NIH has launched the RECOVER Initiative to study and prevent Long Covid, and legislators have also introduced bills such as the TREAT Long Covid Act that may help direct further funding to the development of Long Covid treatments. There is also increasing awareness and recognition of Long Covid’s effects on other social spheres and the need for other policy interventions, such as on workers and the labor market.
In our paper, we therefore characterized the “gaslighting” rhetoric mobilized by patients as a form of “ontological politics.” Accusing doctors of gaslighting, patients contest the ontological status assigned to their symptoms, and elevate individual troubles into collective contention.
Those of us at the CATS Project are continuing this work of documenting experiences with Long Covid in new contexts. In Brazil, we wrapped up a similar study consisting of a similar survey and follow-up interviews, in collaboration with Renan Leonel Gonçalves da Silva and Amanda Curi. In China, we are also beginning to track how Long Covid is portrayed and understood in a very different social context and political moment. We hope to be able to report findings from these other parts of our study in the near future.
Larry Au, Cristian Capotescu, Gil Eyal, and Gabrielle Finestone. “Long Covid and medical gaslighting: Dismissal, delayed diagnosis, and deferred treatment.” In SSM – Qualitative Research in Health 2022.
Image: National Cancer Institute via Wikimedia Commons