Long Struggle: A Personal Journey Living and Navigating Healthcare with Long COVID
TL/DR –
The article presents a personal narrative of a long-COVID sufferer, who tested positive for COVID-19 in 2024, detailing their struggle with debilitating symptoms and difficulty accessing necessary medical care. The article reveals that less than half of doctors know how to diagnose long COVID, with even fewer reportedly knowing how to treat it, due to the complex collection of symptoms that can affect almost every organ system in the body. There is a lack of long-COVID clinics, with many having closed due to low demand, patient numbers dwindling, or patients being unable to access care due to insurance policies, licensing, telehealth laws, or cost of travel; this leaves a significant number of patients without necessary medical support or treatments.
Long COVID: A Tough Battle Amid a Misunderstood Disease
Having been stricken with COVID, I found myself in a dark house, tormented by continual headaches and overwhelmed by despair. I was struggling with long COVID in 2024, long after most Americans considered the pandemic resolved. This condition, according to Yale Medicine, can trigger mood dysregulation, depression, and continuous stress.
Long COVID: A Medically Challenging Situation
Long COVID, a collection of symptoms affecting various body organs, remains difficult to define and treat. Theories about it include persistent inflammation, unable to fully eradicate the virus, and tissue damage. A 2023 survey revealed that less than 50% of doctors can diagnose long COVID, while only 28% know how to treat it.
A Personal Struggle with Long COVID and the Healthcare System
On a personal level, I experienced the excruciating effects of long COVID while trying to navigate the American healthcare system. Trying to get help was a huge challenge, as I was unable to perform basic tasks like reading, writing, or even using screens.
Understanding the Prevalence and Impact of Long COVID
The latest federal survey in September 2024 revealed that over one in 20 adults in the United States had long COVID, a health condition lasting more than three months. Despite vaccines offering some level of protection against the disease, getting COVID still poses the risk of long COVID. About 25% of persons with this condition report significant disruption to their daily activities. Unfortunately, there are no FDA-approved medications for this condition, leaving most of its treatment to symptom management.
Long COVID Care: Frustrations and Roadblocks
Seeking care for long COVID pushed me to the extent of needing to travel. Several attempts to reach renowned clinics like the Cleveland Clinic proved fruitless. Some clinics had even closed down due to low demand, while others were inaccessible due to insurance limitations, lengthy wait times, and geographical restrictions.
The Rise and Fall of Long COVID Clinics
During the pandemic, hundreds of long COVID clinics had opened across the country but started closing as the disease received less attention. Some clinics stopped operations after patient numbers dwindled, while others referred long COVID patients to primary care. As of now, 22 states do not have long COVID clinics accepting new patients, making access to care difficult for almost 3 million people.
Long COVID Patients: Stories of Struggles and Neglect
With long COVID clinics shutting down, patients are left in desperate situations. Ryan Parker from Portland, Oregon, found himself bedridden after a work trip and could not get the care he needed when his long COVID clinic closed. Meanwhile, Myisha Hill from Las Vegas could not access a local clinic that had shut down, leaving her to grapple with her severe symptoms on her own.
Long COVID: A Dire Need for Better Healthcare
Today, the available resources for long COVID patients are insufficient, and the future looks bleak. The Department of Health and Human Services has dissolved its advisory committee on long COVID and plans to close its Office for Long COVID Research and Practice. This dire situation highlights the need for a more compassionate and effective healthcare system to address this complex disease.
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