My husband and I have a weekly video call with my mother-in-law, who happens to be a doctor in New Delhi. Usually, our conversations are lighthearted, but one morning, she wanted to discuss a more serious topic – my health. I had been struggling with a disabling chronic illness ever since contracting COVID-19, and I had mentioned it to her several times. Knowing many doctors across various specialties, she asked if she could share my lab results with some of them for an informal opinion. I thought, why not? Maybe they could provide some valuable insights that others had missed.
A couple of weeks later, on a sunny morning in June 2021, my mother-in-law joined our video call with an enormous smile on her face. She had heard back from her doctor friends.
“Great news!” she exclaimed. “They reviewed your labs and medical history. It turns out,” she paused for dramatic effect, “there’s nothing wrong with you! Just focus on healthy eating, practice yoga every day, and you’ll start feeling better soon.”
My heart sank. After over a year of discussing my debilitating symptoms, which had rendered me unable to work or even get out of bed at times, my own family didn’t believe I was truly sick? I didn’t want to offend my mother-in-law, so I mustered a forced smile, thanked her for her efforts, and remained silent. But once the call ended, tears started flowing uncontrollably. It was beyond belief that even she couldn’t comprehend my situation, and I felt ashamed for reacting so strongly.
I have been suffering from long COVID since March 2020, and this illness has opened my eyes to the dismissive treatment often faced by patients, especially women, with chronic illnesses. Doctors repeatedly doubted the validity of my symptoms, leaving me without proper medical care for over a year. Unfortunately, my experience is not unique.
A recent study revealed that patients with long COVID have often encountered medical professionals who dismissed their experiences, resulting in lengthy struggles to obtain diagnoses and appropriate treatment options. Many patients likened these interactions to “gaslighting,” where they would state an obvious truth but face disbelief.
Discrimination appears to be a driving force behind these dynamics. The widespread dismissal of long COVID echoes the experiences of many individuals with chronic pain and conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Patients with these illnesses often spend years fighting for recognition and proper treatment. ME/CFS, which shares similarities with long COVID and can develop after infections like mononucleosis, has a particularly troubling history.
People with severe ME/CFS have waited decades for doctors to take their symptoms seriously. Their lives have been wasted away in darkened rooms, with the most severely affected unable to leave their beds or perform basic tasks like eating, showering, or using the bathroom without constant assistance. Shockingly, around 90% of individuals with ME/CFS, the majority of whom are women, remain undiagnosed. Long COVID echoes this tragic pattern, although patients with this condition have faced less neglect compared to ME/CFS.
Like many others with long COVID, my journey began with a supposedly “mild” case of COVID-19. Doctors assured me that it would resolve within 7-10 days, so I rested in bed, waiting for it to pass. However, as weeks went by, my symptoms didn’t improve; they only changed. I no longer experienced shortness of breath, but I developed problems with my vision, leading to eyestrain and extreme sensitivity to light.
My main symptom, overwhelming exhaustion, became increasingly worse. It was unlike any form of sleep deprivation or fatigue from overexertion. Rather, it felt more akin to the aftermath of being struck in the head with a bat – constant headaches, blurry vision, pain triggered by light and sound, and an overwhelming urge to retreat and wait for the illness to subside. After about a month, I could barely leave my bed. Hours upon hours would pass as I lay in a dimly lit room, gazing out the window at a small patch of sky.
Gradually, I began to grasp the likelihood of my illness being long-term. One day, I glanced at the background photo on my phone – a picture of a hiking trip to Maine on a previous Labor Day. Jagged rocks, towering pine trees, and a vast blue ocean welcomed me into nature’s embrace. Despair washed over me as I realized that I might never experience such freedom again without the constraints of a failing body. I expressed my fear to everyone – my family and doctors – that I might never recover. Their responses were variations of “I understand how you feel,” but they didn’t truly grasp the gravity of my situation.
After approximately six weeks of severe illness, I desperately sought the expertise of a medical professional who could provide insights into my condition. I found a primary care doctor and recounted my story: the crushing fatigue that made me feel physically weighed down, the vision difficulties, and the excruciating headaches and nausea triggered by normal light and sound. She listened for a few minutes before issuing a half-smile and proclaiming that my symptoms were caused by anxiety. I admitted to feeling anxious, but how could anxiety alone affect my ability to focus my eyes? “Yes,” she replied dismissively, maintaining the same half-smile, as if addressing an obstinate child.
Months later, I visited a neurologist who, after conducting tests, concluded that my symptoms were likely a rational response to the traumas of the pandemic, thereby attributing them to anxiety or depression.
Even my therapist, for months, didn’t believe that I was genuinely sick. She provided misguided medical advice that she wasn’t qualified to offer, convinced that my symptoms stemmed from obsessive-compulsive disorder. According to her rationale, I fixated on monitoring my bodily sensations, leading me to falsely believe that I could barely function. She advised me to avoid consulting doctors after my primary care provider linked my symptoms to anxiety. “Just try to pay less attention to your body and live your life as best as you can,” she advised.
As anyone familiar with long COVID or similar illnesses knows, ignoring symptoms is a recipe for disaster. Treating long COVID as a psychological disorder is negligent and dangerous. Patients are encouraged to “push through” their exhaustion, which often exacerbates their conditions.
Despite the lack of support, I managed my illness as best as possible for the following six months, eventually improving enough to return to my full-time job. However, everything came crashing down when I experienced a severe relapse in October 2020, following weeks of overwork and familial stress. Once again, I found myself confined to my bed. Over two years have passed, and although there has been some progress, I am still sicker than I was before the relapse. I confronted my therapist shortly after the relapse, emphasizing, “I am not anxious. My anxiety is well-controlled. I simply feel terrible.” She sighed, realizing her mistake, and replied, “Okay, yes, go consult someone about it.” However, she never took responsibility for her significant error and failed to apologize. Eventually, I sought out a new therapist who believed in my illness.
Many experts believe that skepticism towards chronic illnesses stems from deep-seated sexism ingrained in the field of medicine. In an article for The New England Journal of Medicine, Dr. Steven Phillips and Michelle Williams noted, “If history is any guide, individuals with long COVID will be doubted, marginalized, and shunned by many within the medical community.” They highlighted the disproportionate impact of long COVID on women, which likely exacerbates the dismissive treatment. “Our medical system has a long history of downplaying women’s symptoms and dismissing or misdiagnosing their conditions as psychological,” they concluded.
My personal experiences provide ample evidence that medical discrimination remains prevalent. Doctors concluded that my illness was non-existent, likely because they lacked the knowledge to diagnose or treat it. In all likelihood, being a woman made it even easier for them to dismiss me, as women have endured a long history of medical negligence and disbelief.
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