What Living with Long COVID Truly Entails

When Angela Thompson fell ill in March 2020, the term Long COVID was not yet in our vocabulary. At that time, our understanding of the virus—which has claimed millions of lives—was minimal. We thought it was only a respiratory illness. We were mistaken. We assumed it was transmitted via surfaces. Again, we were wrong. Most concerning of all, we believed that a COVID infection had just two outcomes: survival or death. Once more, we were wrong.

We were unaware of the distressing reality that is Long COVID, nor did we grasp the extent of the health crisis it would soon pose for countless individuals.

Angela Became Ill With COVID In March 2020

In March 2020, Angela was aware of COVID’s existence. She had heard about the initial cases in the U.S. and was anxious about the virus spreading. However, when her partner, Laura, fell ill, neither of them considered it might be COVID. “We were somewhat in denial about it,” Angela shared during a phone conversation. This reaction is understandable, as many of us were unprepared for the reality of the situation.

Angela became ill about a week after Laura. Her health declined dramatically when Laura was hospitalized, and Angela was unable to visit her—this stress undoubtedly worsened her own condition.
Image courtesy of Angela Thompson

Unlike the typical COVID symptoms—such as cough, fever, and loss of taste and smell—Angela’s symptoms were primarily gastrointestinal. She experienced extreme fatigue, numbness in her limbs, a sensation of burning throughout her body (without a fever), and an inability to eat for nearly two weeks due to her body rejecting food entirely. By the time Laura returned from the hospital, Angela could barely muster the strength to get out of bed.

She visited the emergency room, where doctors agreed she likely had COVID, but her tests repeatedly came back negative—probably due to the timing of her symptoms and the questionable accuracy of the testing protocols.

A Mentally Challenging Time

By the end of May, Angela had not improved. She was mostly bedridden, battling high blood pressure, heart palpitations, excessive sweating, dizziness, insomnia, and a sense of her chest constricting as if her body was forgetting to breathe on its own. At one point, she lost the use of both hands for several days.

Food became her greatest challenge. Each meal caused her body to shut down, leaving her unable to move or breathe easily until digestion began, as though her body could only manage one function at a time.

Angela recalls the most frightening moment was after trying to drink three sips of Ensure, a meal replacement intended to boost her caloric intake. After those sips, her body completely shut down. “I didn’t know if I was going to die; I just kept waiting for the other shoe to drop,” Angela reflects. During this time, the emergency room physicians told her there was nothing they could do and sent her home.

The Long COVID Recovery and Relapse Journey

By July and August 2020, Angela showed signs of recovery. She was able to take short walks and engage in mild physical therapy. Although she wasn’t fully herself, things seemed to be improving. However, a busy day led to a significant setback, and that relapse lasted until October.

By then, Long COVID was becoming a topic of discussion—if not on a national scale, then at least across social media platforms. Through a Long COVID support group, Angela connected with others experiencing similar symptoms. “It was comforting to talk to people who understood what I was going through,” she recalls, particularly as the medical professionals she encountered often made her feel as if she were imagining her symptoms.

Angela enjoyed a relatively good holiday season, but by April 2021, everything fell apart. A new doctor recommended altering her medications and supplements. By the end of the month, Angela found herself unable to walk or even perform basic tasks like brushing her teeth. There was a night when she couldn’t raise her arm to tap Laura for help.

Eventually, when she began twitching, she was admitted to the hospital. What followed was a brief stay, followed by an ongoing cycle of recovery and relapse. In July, yet another severe relapse caused temporary paralysis, and at times, she could only communicate through simple code—“wa” for water, “f” for food.

Dismissal by the Medical Community

Throughout her ordeal, Angela was frequently dismissed, ignored, or poorly treated by healthcare providers. She recalls a psychiatrist who claimed her debilitating fatigue was “all in her head,” as well as a physical therapist who pushed her beyond her limits, leading to the development of non-epileptic seizures. Her first seizure lasted an astonishing seven hours.

Fortunately, there were positive experiences along the way that made a significant difference. A switch to a new clinic introduced Angela to a compassionate doctor who listened to her concerns and validated her experiences. That was when things began to change for the better.

Life with Long COVID Today

In an email, drafted with Laura’s assistance, Angela outlined her ongoing health struggles: “After COVID, I developed Long COVID, Chronic Fatigue Syndrome (CFS), histamine intolerance, Mast Cell Activation Syndrome, dysautonomia, Functional Neurological Disorder (essentially, my brain’s wiring got all mixed up), GERD, Psychogenic Non-Epileptic Seizures (PNES), and elevated thyroid antibodies.” Angela remains homebound and hasn’t taken a walk since October 2020. Although she can sit up and is working towards standing, her recovery involves extreme rest, heart rate monitoring, dietary adjustments, and daily meditation.

With guidance from a CFS survivor who shares her recovery insights, Angela learned the significance of pacing her energy. “That has helped more than anything,” she asserts.

Image courtesy of Angela Thompson

A Committed Partner

Throughout this challenging journey, Angela has had the unwavering support of friends and family. A close friend initiated a GoFundMe campaign to assist with medical expenses, and many have stepped in to help. But no one has been more instrumental than Laura, whom Angela credits as “a major part of my healing process.” Aware of the strain this has placed on Laura, Angela wrote, “I couldn’t have progressed without her unyielding love, care, and commitment to my recovery.”

Angela is slowly but surely improving, although she understands that the road ahead is long. “I am grateful for every moment of this life I’ve been given, and despite everything that has transpired, I believe there is a purpose for it all, including my own journey.”

Angela’s narrative is filled with both suffering and hope—hope for recovery, hope for brighter days ahead, and hope that by sharing her experience, she can raise awareness for the countless individuals silently enduring Long COVID, who need someone to hear them and understand their struggles.

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Summary: Angela Thompson’s experience with Long COVID illustrates the often-overlooked challenges faced by individuals post-infection. Her journey, marked by severe symptoms and a lack of understanding from the medical community, highlights the need for awareness and support for those suffering from Long COVID. With the unwavering support of her partner, Angela continues to navigate her recovery, sharing her story to foster hope and understanding among others in similar situations.