Long COVID and Gaslighting
Are you experiencing gaslighting related to a long-term illness?
Posted April 11, 2022 | Reviewed by Abigail Fagan
- Some patients with long COVID may experience gaslighting related to their symptoms.
- These patients are twice victimized, first by their symptoms and then by the reaction of others to their illness.
- Women and people of color tend to receive poorer quality medical care.
Every day we may witness examples of the many layers of gaslighting’s harmful interpersonal outcomes from workplaces, to families, to our governments worldwide, to the economy, to our global healthcare, and to mental health. Gaslighting is not new in our civilization by any means (OurStory, 2022), but we now know more about the origins and motivations for this harmful, psychologically abusive behavior.
Long COVID Gaslighting
Gaslighting in the area of long-term illness is more subtle and can often go unacknowledged, and it is occurring today as one consequence of the pandemic. Based on what we know from past epidemics such as the Spanish Flu of 1918, SARS, Ebolavirus, and tick-borne encephalitis, a certain percentage of people with a variety of infections (viral or bacterial) will experience persisting symptoms or the development of new symptoms. As an example, some estimate that 10% of those previously infected with COVID-19 have not fully recovered, and they have persisting or new symptoms such as fatigue, muscle aches, rashes, shortness of breath, and difficulty concentrating or focusing. Due to this pandemic, there are estimates that total Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) prevalence could rise to 9 million in the US, which could incur an annual US economic impact of up to $362 billion in medical expenses and lost income.
Many have clear reasons for their persisting symptoms such as those with post-ventilator syndromes or obvious damage to lungs, heart, organs, or the brain lung scarring (e.g., blood clots, renal failure, neurological complications, and heart damage). But for those without these identifiable medical causes of symptoms, gaslighting can occur, and their long COVID symptoms may have been either dismissed or attributed to psychiatric causes.
Those without clear biological explanations of their post-viral symptoms due to COVID sometimes experience gaslighting from the very people who are assigned to be their helpers. Whenever an illness has hard-to-understand symptoms, such as those that affect people with ME/CFS, some experts are too quick to patronize and even undermine efforts to cope with their illness. In a sense, these patients are twice victimized, first by having debilitating symptoms and then by the reaction of others to their illness. With long COVID, particularly where the symptoms persist without easy-to-recognize organic damage, some health professionals have engaged in gaslighting, stigmatizing, and denying the serious nature or legitimacy of their illness.
Gaslighting occurs when patients with long COVID are seen by their primary care healthcare professionals, and when clear biological damage in cardiac or other areas is not uncovered, an all too common reaction is disbelief that their symptoms have continued past the viral infection. Healthcare professionals might say they are sorry that “you feel” or “you believe” that there is something wrong, but then are quick to inform the patient that their physical exam or blood work has come out normal. In a patronizing style, patients are sometimes told they will feel better taking anti-depressants or just exercising. These types of treatments might be appropriate for those with a Major Depressive Disorder, but patients with long COVID, as well as ME/CFS, may be being gaslit, and these insensitive and harmful interventions can produce irrevocable harm. We also know that women and people of color receive poorer quality care. The consequences can be dire, particularly for those with few economic resources, who can lose their sources of income and become housing insecure and isolated. What they so desperately need is validation, provision of needed help and compassion, and an exploration of their complaints but not gaslighting.
When patients with long COVID experience misdiagnoses and inappropriate treatments, they are also experiencing gaslighting.
Gaslighting in any form, for any reason, is harmful.
This millennia-old behavior, perhaps once idolized as clever and cunning, may be becoming more frequent and is even less acceptable in a world that needs to move away from harm and towards increasingly meaningful daily human interactions.
Jason, L. A., & Islam, M. F. (2022). A classification system for Post-Acute Sequelae of SARS CoV-2 Infection. Central Asian Journal of Medical Hypotheses and Ethics, 3(1), 38-51. https://cajmhe.com/index.php/journal/article/view/146/66
Jason, L. A., Islam, M., Conroy, K., Cotler, J., Torres, C., Johnson, M., & Mabie, B. (2021). COVID-19 symptoms over time: Comparing Long-Haulers to ME/CFS. Fatigue: Biomedicine, Health & Behavior, 9(2), 59-68. PMCID: PMC8411893 http://dx.doi.org/10.1080/21641846.2021.1922140
Jason, L. A., Cotler, J., Bhatia, S., & Sunnquist, M. (2021). Chronic illness: The case of Chronic Fatigue Syndrome-Myalgic Encephalomyelitis. In D.F. Ragin & J.P. Keenan (Eds.), Handbook of Research Methods in Health Psychology (pp 228-241). New York, NY: Routledge.
Mirin, A. A., Dimmock, M. E., & Jason, L. A. (2022). Updating the National Academy of Medicine ME/CFS prevalence and economic impact figures to account for population growth and inflation. Fatigue: Biomedicine, Health & Behavior, https://doi.org/10.1080/21641846.2022.2062169
OurStory Education. (2022, April 6). Human Doing Special Topic: Gaslighting. [Weekly virtual discussion]. Omnigi Research, Virtual. https://www.omnigi.com
Sebring, J. C. H. (2021). Towards a sociological understanding of medical gaslighting in western health care. Sociology of Health & Illness, 43(9), 1951–1964. https://doi.org/10.1111/1467-9566.13367
Mariani, M. (3 Feb 2022) The great gaslighting: how Covid longhaulers are still fighting for recognition. The Guardian. https://www.theguardian.com/society/2022/feb/03/long-covid-fight-recogn…
Moyer, M. W. (28 March 2022). Women are calling out 'Medical Gaslighting'. The New York Times. https://www.nytimes.com/2022/03/28/well/live/gaslighting-doctors-patien…