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How People With Chronic Fatigue Are Gaslit by Healthcare Systems
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How People With Chronic Fatigue Are Gaslit by Healthcare Systems
In 2020, Patrick Ussher was unusually thirsty. At the worst of it, he was drinking 20 liters of water in 24 hours. By January 2021, without answers, he sought out emergency medical care. He hadn’t yet been officially diagnosed, but since 2018, his general practitioner had suspected he had myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS. Extreme thirst, medically termed polydipsia1, can be a debilitating symptom of ME/CFS, but also one that’s shrugged off by healthcare providers.
And that’s exactly what happened to Ussher. He was told, ”You’re only in here because of drinking so much water,” and “Will we have to go with you to the toilet in case you drink behind our back?” He even overheard care providers laughing about his symptoms, as he writes in his book, Understanding ME/CFS & Strategies for Healing.
According to the New York State Department of Health: “Myalgic Encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome or ME/CFS, is a widely misunderstood disease … a serious, debilitating, chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body's production of energy.
“The period of my hospitalisation was the loneliest and most humiliating of my life,” Ussher, 36, a ME/CFS advocate living in The Gers, France, tells States of Mind. “I tried to explain that ME/CFS patients could suffer from extreme thirst and pointed to journal articles2 which supported the biological basis for this. Everything was dismissed out of hand, and I felt I had no one to turn to.”
He was finally diagnosed with ME/CFS by a specialist in March 2021, but not before he had experienced multiple encounters with this kind of dismissal, often called medical gaslighting or medical invalidation3. “A few years prior, a French GP suspected I had an ‘hysterical-neurotic conversion disorder4,’” Ussher explains. “I only learned this as I opened his referral letter to an internist, a letter in which he ignored the majority of my symptoms, instead suggesting my case be taken on by a psychiatrist.”
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What Gaslighting Looks Like for People With Chronic Fatigue
It’s hard to know exactly how many people live with ME/CFS5, but an estimated 17 to 24 million people may have this condition around the world, according to the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society.
People with ME/CFS experience severe fatigue and exhaustion, even after tasks that would seem to require minimal effort, such as grocery shopping. The exact cause isn’t clear, but it may be triggered by an infection and it may have a genetic component. When this fatigue disrupts daily life, patients often seek medical attention from primary care providers. These doctors typically order blood work, which often doesn’t uncover any obvious issues.
Medical Invalidation: Also known as medical gaslighting3, happens when a patient’s symptoms or experiences are dismissed, minimized, or pathologized by a healthcare provider. This can erode trust between patient and doctor, and can lead to emotional distress, misdiagnosis, and even delayed treatment.
“The physician basically says, ‘You look like a healthy person, and I don’t understand what the problem is,’” says Leonard A. Jason, PhD, professor of psychology at DePaul University in Chicago, and director of the University’s Center for Community Research, who has researched and published on gaslighting and chronic illnesses.
Of course, plenty of healthy adults have some level of fatigue. In fact, as many as 20 percent of adults worldwide feel general fatigue, according to a 2023 review and meta-analysis in Frontiers of Public Health6. But that means physicians routinely recommend lifestyle changes, such as adjusting sleep habits or considering talk therapy, that won’t necessarily help with chronic fatigue, even as patients insist they aren’t dealing with an emotional or mental health issue.
The situation is akin to a doctor examining a person’s elbow, declaring that all is fine, while the patient has a broken leg and is screaming in agony.
“The physician says, ‘You’re probably overworked, you’re probably not aware of some unhappiness, and your blood tests look fine, so I’ll give you a referral to a psychiatrist and you can get on medication for depression,’” Jason says. A person with ME/CFS leaves that appointment feeling like “the seriousness of their complaints is completely dismissed,” he says.
“It’s really a traumatic experience, because they’re being told that what they’re experiencing is not real, so immediately they feel like they’re being told that they’re making it up,” says Alba Azola, MD7, director of the Chronic Fatigue Syndrome and Associated Disorders Clinic at Johns Hopkins Medicine in Baltimore, Maryland, USA. That trauma compounds, as people with ME/CFS see more and more specialists who can’t find anything measurably amiss, she adds.
A December 2023 article in Medicina8 echoed this attitude. “Physicians convince patients that they are imagining the disease, that they are overdramatizing the situation, or that they are psychosomatically ill,” the researchers write.
People with ME/CFS may also be dismissed as being hypochondriacs, according to a November 2021 report in Mayo Clinic Proceedings. As such, “almost all patients consider obtaining an ME/CFS diagnosis to be a turning point in their illness, allowing them to better understand, explain, cope with, and find support for their situation,” the researchers write. In other words, when people with ME/CFS don’t get an accurate diagnosis because care providers have dismissed their symptoms, they won’t know which coping mechanisms, treatments, and therapies to try. “They’re not getting access to that wealth of information, and that’s the tragedy,” Jason says.
“Treatment is greatly needed, as the level of suffering is very high,” Ussher adds. In fact, a 2015 PLOS One9 study found people with ME/CFS reported the lowest quality of life compared to people with 20 other chronic health conditions. “This cannot go on,” Ussher says. “It is a public health emergency.”
What It Will Take for Treatment of Patients to Change
There is currently no diagnostic test for ME/CFS. While researchers are investigating potential measurable biological markers of the condition, most primary care physicians wouldn’t have access to the kind of clinical testing this would entail, Jason says.
“At the moment, the situation is akin to a doctor examining a person’s elbow, declaring that all is fine, while the patient has a broken leg and is screaming in agony,” Ussher says. “The most prevalent diagnostic setups are simply not able to capture the problem.”
Other healthcare providers may not be familiar enough with ME/CFS to diagnose it properly. Dr. Azola attributes much of this lack of understanding to education. “Physicians need to learn the basics, at least, of recognizing it at initial interventions,” she says. “It needs to be part of the core curriculum of medical school, so the exposure should be early on.”
Ussher agrees: “If future cohorts can leave medical school armed with such knowledge, then the psychosomatic narrative gets put to bed forever. That would also create a generation of scientists far more interested in researching the condition,” he says.
It’s really a traumatic experience, because they’re being told that what they’re experiencing is not real.
Currently, scientists often lack funding for ME/CFS research10. Yet with more research, experts could work toward a more complete understanding of potential causes and treatments of ME/CFS, resulting in more options and less dismissal for patients. “That’s difficult these days, because there are lots of people who are trying to get more research funding,” Jason says.
Additional research might also help dispel some of the lingering myths physicians themselves still cling to. Some still don’t fully believe ME/CFS is a legitimate clinical diagnosis and not psychosomatic, per the Medicina report.
This disbelief dates back decades, as cases of ME/CFS (before it had been renamed as such) were routinely attributed to the outdated and sexist concept of “hysteria,” according to a 2021 history of the diagnosis in Healthcare11. A 1988 paper in The Journal of Allergy and Clinical Immunology attributed it to “poor coping skills.”
When care providers are up-to-date in their knowledge, appointments can become opportunities not only for treatment, but also for meaningful mental and emotional healing. Part of what Dr. Azola does (and encourages other physicians to do) is “acknowledge that what patients are experiencing is real and that there is an explanation,” she says. “It’s so therapeutic, because they have been operating in a system that’s been telling them that everything is fine.”
This doesn’t always come easily: If someone with ME/CFS has had repeated negative encounters with medical professionals, it’s understandable that they may be guarded, skeptical, and hesitant when meeting a new physician. “Sometimes it takes weeks and months before I can get somebody to start trusting me and become ready to accept interventions that I know are going to be helpful for them because they’ve been burned so many times,” she says.
Yet she remains hopeful for change. The current system “is not doing a good job, and it’s causing harm,” she says, but she has seen some shifts since the start of the COVID-19 pandemic and the rise in long COVID. Today, she believes more physicians are willing to look closely at someone’s unexplained symptoms and search harder for a root cause. “But I don’t think that they’re that much better,” she says. “I do think that there’s a lot of work to be done.”
Ussher is eager to see that work done. “When doctors finally come to learn what ME/CFS involves, I believe many will be humbled to learn that such a complex disease could have evaded all of their standard tests,” he says.
Expert Board Member
This article powerfully documents the systematic dismissal of ME/CFS patients within healthcare systems - a pattern that leaves millions without diagnosis, treatment, or validation. Through compelling personal narrative and expert analysis, it reveals how outdated beliefs and inadequate medical education perpetuate suffering. Essential reading for understanding medical gaslighting and the urgent need for improved ME/CFS recognition and research.
