What Life is Truly Like with Long COVID

In March 2020, when Mia Thompson fell ill, the term Long COVID was still unfamiliar to the public. At that time, the global understanding of the virus, which has claimed millions of lives, was limited. Many thought it was strictly a respiratory illness. However, as we’ve learned, this was a misconception. We also believed that COVID could only be transmitted through surfaces, which we later found out was incorrect. Perhaps most alarmingly, we thought an infection would result in one of two outcomes—survival or death. Again, we were mistaken.

The reality of Long COVID loomed large on the horizon, but we were yet to comprehend its magnitude and the health crisis it would become for countless individuals.

Mia’s Battle with COVID-19

Mia was aware of COVID’s existence in early 2020. She had heard about initial cases in the United States and felt anxious about the virus’s potential spread. However, when her partner, Jenna, fell ill, neither of them suspected it was COVID.

“We were somewhat in denial about it,” Mia shared in a conversation. It was a common reaction; many were unaware of the virus’s presence. Mia’s condition deteriorated about a week after Jenna was hospitalized, and the stress of not being able to see her partner took a toll on her health.

Unlike the typical COVID symptoms—cough, fever, and loss of taste or smell—Mia experienced primarily gastrointestinal issues. She battled severe fatigue, numbness in her limbs, a constant burning sensation in her body, and an inability to eat for two weeks as her system rejected food completely.

By the time Jenna returned from the hospital, Mia struggled even to leave her bed. She visited the emergency room, where doctors suspected COVID based on her symptoms, but multiple tests came back negative, likely due to the timing and flawed testing protocols.

A Troubling Mental State

By late May, Mia was still suffering. Bedridden and facing high blood pressure, heart palpitations, dizziness, and insomnia, she felt as though her chest was constricting and her body was forgetting to breathe involuntarily. At one point, she lost the use of both hands for several days.

The hardest part was eating. Whenever she tried, her body would shut down, making it nearly impossible to move or breathe until the food passed through her system. Mia recalls one traumatic episode after just three sips of a meal replacement drink, saying, “I felt like I was waiting to die at any moment.”

During this period, the emergency room doctors had little to offer her and sent her home.

The Long COVID Recovery Journey

By July and August 2020, Mia appeared to be on the mend. She could go outside, take walks, and participate in light physical therapy. However, a busy day triggered a significant setback, and her relapse persisted until October.

By then, Long COVID was gaining attention online, and through a support group, Mia connected with others facing similar struggles. “It was comforting to talk to people who understood my symptoms,” she reflected, especially because her healthcare providers often dismissed her experiences.

Mia enjoyed a relatively good holiday season, but everything changed in April 2021 when she saw a new doctor who adjusted her medications. By the end of the month, she was unable to walk or perform basic tasks. One night, she couldn’t even lift her arm to get her partner’s attention.

After experiencing twitching, she was finally admitted to the hospital. What followed was a series of fluctuating recoveries and setbacks. A particularly brutal relapse left her temporarily paralyzed, forcing her to communicate with simple codes.

Challenges with the Medical Community

Mia faced numerous obstacles while seeking medical care. She recalls a psychiatrist who suggested her extreme fatigue was merely “in her head,” and a physical therapist who pushed her body beyond its limits, exacerbating her condition. Following that session, Mia developed non-epileptic seizures, with her first lasting seven hours.

Fortunately, there were glimmers of hope when she connected with a compassionate doctor at Cornell, marking the beginning of her recovery.

Current Life with Long COVID

In an email, which Mia composed with Jenna’s assistance, she outlined her diagnosis: “After COVID, I developed Long COVID, Chronic Fatigue Syndrome (CFS), histamine intolerance, Mast Cell Activation Syndrome, dysautonomia, Functional Neurological Disorder, GERD, Psychogenic Non-Epileptic Seizures, and elevated thyroid antibodies.”

Mia remains mostly homebound and hasn’t taken a walk since October 2020. She can sit up and is working towards standing. Her recovery strategies include extreme rest, heart rate monitoring, dietary adjustments, and daily meditation. With insights from a fellow CFS sufferer, Mia has learned the importance of pacing her energy, which she states has been crucial.

Through it all, Mia had the unwavering support of friends and family. A friend initiated a GoFundMe campaign to assist with medical expenses, and Jenna has been her rock throughout this challenging journey. “I couldn’t have made it this far without her love and dedication to my recovery,” Mia expressed.

Although Mia acknowledges the long road ahead, she remains grateful for her life and believes in a purpose behind her struggles. Her story embodies both suffering and hope—hope for recovery, for brighter days, and for greater awareness regarding the many individuals dealing with Long COVID who need understanding and compassion.

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Summary

Mia’s experience with Long COVID underscores the profound impact of the condition on her life. From gastrointestinal issues to debilitating fatigue, her journey has been fraught with challenges, exacerbated by often dismissive medical responses. Despite these hurdles, Mia’s story is one of resilience, highlighting the importance of support and the hope for recovery amidst an ongoing health crisis.