My husband and I have a video call every Sunday with my mother-in-law, a doctor in New Delhi. The conversation is usually light, but one morning she wanted to discuss the more serious matter of my health. For more than a year, I’d talked about how I’d been struggling with a disabling chronic illness following an infection with COVID-19. She knew doctors across specialties and asked if she could share my lab results with a few of them for an informal opinion. I agreed, thinking that I had nothing to lose. Maybe they’d uncover some insight that others had missed.
A couple of weeks later, on a sunny morning in June 2021, my mother-in-law signed on to the video call with a huge smile. She’d heard from her doctor friends.
“Great news!” she said. “They looked at your labs and history. It turns out” — cue drumroll — “there’s nothing wrong with you! Focus on healthy eating, do yoga every day, and you’ll feel better soon.”
My heart dropped. After more than a year of talking about the symptoms that had left me unable to work ― and sometimes to get out of bed ― my own family didn’t believe I was sick? I didn’t want to offend her. I forced a tight smile, thanked her for trying, and then stayed silent. After the call ended, I began to cry ― incredulous that even she didn’t understand and ashamed for acting so upset.
I’ve had long COVID since March 2020. My illness has given me a firsthand look at the dismissal faced by patients, especially women, who have chronic illnesses. Doctors repeatedly doubted the reality of my symptoms, leaving me without medical care for more than a year. Sadly, I’m not alone in this experience.
In a recent study, patients with long COVID “described encountering medical professionals who dismissed their experience, leading to lengthy diagnostic odysseys and lack of treatment options.” They often characterised these interactions as “gaslighting,” the maddening feeling of stating an obvious truth and then being disbelieved.
Discrimination appears to drive these dynamics. The widespread dismissal of long COVID is a familiar story for many people with illnesses such as chronic pain and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. Patients often struggle for years to receive diagnoses and treatments. ME/CFS, a disease that’s similar to long COVID and can result from infections such as mononucleosis, has a particularly ugly history.
Many of those with severe ME/CFS have waited decades for doctors to take their symptoms seriously. Meanwhile, their lives have wasted away in darkened rooms, as the sickest patients are unable to leave their beds or care for basic needs — eating, showering, using the bathroom — without around-the-clock help. About 90% of all people with ME/CFS, the vast majority of whom are women, still haven’t been diagnosed. Long COVID echoes this tragedy, although patients with the disease have faced less neglect than those with ME/CFS.
Like many people with long COVID, my illness started with a “mild” case of COVID-19. It was the kind of infection that doctors said would “resolve in 7-10 days.” I got into bed and waited. However, as days turned into weeks, my symptoms weren’t getting better; they were merely changing. I no longer felt short of breath but began “having trouble looking at things,” as I said about my eyestrain and light sensitivity.
My main symptom, a crushing exhaustion, was growing worse. The feeling was unlike sleep deprivation or overwork. Rather, it was more akin to the aftermath of being hit in the head with a bat: constant headaches, unfocused eyes, pain caused by light and sound, and a sense that I needed to curl into a cocoon and wait for the sickness to pass. After about a month, I could barely get out of bed. I would lie in a dim room for interminable hours, looking out my window at a patch of sky.
I began to understand intuitively that my illness could be long-term. Once, I glanced at the background of my phone: a picture of my hike in Maine over the previous Labor Day, with jagged rocks and pine trees opening to reveal a vast blue ocean. Despair began to creep into my chest, as I realised I might never again walk through nature unencumbered by a failing body. I told everyone — my family, doctors — that I was afraid I wouldn’t get better. They said variations of “yes, I know you feel that way.”
After being seriously ill for about six weeks, I was desperate to talk to an expert who could explain what was happening to me. I found a primary care doctor and told her my story: I couldn’t get out of bed for more than 30 minutes without feeling physically crushed. I had trouble focusing my eyes. Exposure to normal light and sound would give me terrible headaches and nausea, and would make me feel terribly sick.
She listened for a few minutes and then, with a half-smile, said my symptoms were caused by anxiety. I agreed that I was anxious, because I wasn’t recovering. But could anxiety cause an inability to focus my eyes? “Yes,” she said flatly with the same half-smile, like she was speaking to a stubborn child.
Five months later, I saw a neurologist. This time, after a series of tests, she said my symptoms were likely to be “a rational response to the trauma of the pandemic.” In other words, I was anxious or depressed.
Even my therapist didn’t believe I was sick for months, giving me terrible medical advice that I now think she wasn’t qualified to offer. She was convinced that my symptoms were caused by obsessive-compulsive disorder. According to her logic, I was obsessed with monitoring the way my body felt, and this caused me to believe, falsely, that I could barely get out of bed. She told me not to talk to doctors after my primary care provider said my symptoms were caused by anxiety. “Just try to pay less attention to your body, and live your life the best way you can,” she said.
As anyone who is familiar with long COVID or similar illnesses knows, my therapist’s advice to ignore my symptoms was bound to end in disaster. Treatment of long COVID as a psychological disorder is negligent and dangerous. Patients are prompted to “push through” their exhaustion, which can make their illnesses much worse.
Even without support, I managed my disease adequately for the next six months, improving enough to return to my full-time job. However, my health came crashing down with a crushing relapse in October 2020, following weeks of overwork and family stress. I became nearly bed-bound again.
I’ve since improved at a glacial speed, but more than two years later, I’m still sicker than I was before my crash. I spoke with my therapist shortly after it happened and said emphatically: “I am not anxious. My anxiety is well controlled. I just feel terrible.” She sighed, realising her mistake, and replied, “OK, yes, go see someone about it.” She didn’t take responsibility for her massive fuckup. She didn’t apologise. Soon afterward, I found a different therapist who believed I was sick.
Many experts think that skepticism around chronic illness is rooted in sexism, which has historically pervaded medicine. In an article for The New England Journal of Medicine, Dr. Steven Phillips and Michelle Williams wrote, “If the past is any guide, they [patients with long COVID] will be disbelieved, marginalised, and shunned by many members of the medical community.” The authors said that long COVID disproportionately affects women, which may exacerbate the disregard. “Our medical system has a long history of minimising women’s symptoms and dismissing or misdiagnosing their conditions as psychological,” they wrote.
My experiences suggest that medical discrimination is, indeed, alive and well. Doctors concluded that my disease didn’t exist, presumably because they didn’t know how to diagnose or treat it. My gender likely made me even easier to dismiss, as women have long been labeled “hysterical.” When I face this kind of mistreatment, I sometimes feel that people’s prejudices are more important to them than my humanity.
After more than a year without medical care, I finally saw two leading specialists in post-infection illness who diagnosed me with long COVID, along with a host of related conditions such as dysautonomia, small fibre neuropathy, mast cell activation syndrome and primary immunodeficiency.
Extensive lab tests, which were taken mostly after my mother-in-law’s attempt to find answers, showed that my immune system is dysregulated, meaning that I am both immunocompromised and have chronic inflammation that continuously injures my body. My nervous system is damaged, preventing my blood from circulating effectively and causing chronic low-level oxygen deprivation. There’s evidence that my body can’t extract oxygen efficiently from my blood vessels, and my mitochondria are damaged.
I eventually convinced my mother-in-law that my illness is real. She and I had an hourlong discussion about long COVID — the research, my lab tests — when she visited my husband and me last summer. This time, my arguments seemed to break through. My husband said she regrets the way she initially reacted and now wholeheartedly believes in the seriousness of my illness.
However, the battle for recognition of long COVID continues. I often see the disease being minimised or dismissed in the news and on social media. A recent Slate article proclaimed, “Long COVID is neither as common nor as severe as initially feared.” In an apparent rebuttal to such statements, Ed Yong said in an article for The Atlantic that “what was once outright denial of long COVID’s existence has morphed into [a conviction] ... that long COVID is less common and severe than it has been portrayed—a tragedy for a small group of very sick people, but not a cause for societal concern.”
Long COVID is far from rare, and it’s often serious. Research has found that 10% of those who first contracted COVID-19 amid the spread of the omicron variant had long COVID after six months, and about one-fourth of people with long COVID say they are significantly limited in their daily activities. People with commonly associated conditions, including dysautonomia and ME/CFS, are expected to experience lifelong symptoms. I’m among those patients, and I know others who are too.
Before my illness, I was an energetic person who could work in an office for 10 hours, go out for drinks in the evening, and then do it all again the next day. Now, my former commute might wipe me out by itself. I can work for five hours on a good day before I need to rest. (When I say “rest,” I mean “lie in a dark, silent room with my eyes closed.”) If I push past my exertion limits, or spend time in loud spaces, I become nauseated and unfocused, and I develop a painful headache.
In May, I attended my sister’s graduation, a two-hour affair full of long speeches and animated screaming. I wore earplugs, but still left the event exhausted and in pain. I got into bed at 4 p.m., put on my eye mask, and didn’t emerge until the next day. My sister, who understands, let me leave without hesitation. I’m not always so lucky. When I tell friends that I need to rest or cancel plans, I often hear polite frustration in their voices.
Some communication gaps are understandable, as most people have never experienced anything like long COVID or similar diseases. The symptoms are mostly invisible to others, who only see that people like me often rest, if they see anything at all. Our society doesn’t have the language to explain these illnesses. Medical terms like “post-exertional malaise,” which refers to the crushing sickness and exhaustion that follows mental or physical exertion, sound more euphemistic than descriptive.
However, even if many people find it difficult to comprehend what long COVID and other chronic illnesses feel like, it shouldn’t be hard to understand that patients’ experiences are real. I’ve never had altitude sickness (a condition characterised by fatigue, headaches and nausea resulting from difficulty adjusting to high elevations), but I’ve never doubted that it exists or heard anyone else do so. That would be bizarre.
Similarly, people who are colourblind presumably accept the word of others who can perceive colours. Chronic illness is the same type of situation, except that it carries widespread stigma. As recently as last year, the disbelief was so profound that many doctors with long COVID were dismissed by their colleagues. Most of the clinicians who doubted my illness were women, suggesting that the sexism contributing to these biases is so ingrained that it often isn’t recognised.
Before I got sick, I had never experienced gaslighting on a wide scale. It was easy to tell myself that most people believed me because they knew I was credible. Now I realise that they were often biased in my favour. I showed people with privilege the world that they wanted to see: a place with few threats, where self-reliance and opportunity will always be available.
Julie Strack is a health communication specialist and writer based in New York City. She has presented original research on health inclusivity at the American Public Health Association’s annual meeting and published on patient-provider engagement in the journal PLOS ONE. Julie has been a patient with long COVID since March 2020. Reach her on Twitter via her account @juliestrack.