Living with Long COVID
The Basics of Crashes, Persistent Fatigue, and Post-Exertional Malaise
Long COVID, also known as Post-Acute Sequelae of SARS-CoV-2 infection (PASC), has left hundreds of millions of people struggling with symptoms long after their initial infection. Among the most debilitating symptoms are crashes, fatigue, and post-exertional malaise (PEM). Crashes refer to sudden and often severe declines in physical or mental energy that can leave a person bedridden for hours or even days. Persistent fatigue is an overwhelming, persistent tiredness that doesn’t improve with rest, while PEM is a hallmark of many post-viral syndromes (in particular ME/CFS), in which even minimal over-exertion leads to a worsening of symptoms, leads to crashes that manifest within 24-72 hrs after the over-exertive activity (Physical, cognitive, or emotional) and can last days or weeks. Together, these symptoms create a complex and often disabling experience for many suffering from Long COVID.
On a day-to-day basis, these symptoms can severely limit the lives of Long COVID patients. Simple activities like walking, cooking, or even concentrating on a task can lead to extreme exhaustion and crashes. Many people find themselves needing to carefully manage their energy levels, sometimes referred to as “pacing,” to avoid triggering PEM. This often means cutting back on social activities, work, and even basic self-care. The unpredictability of crashes and the lingering fatigue can make it difficult to plan ahead or engage in activities that were once routine. For many, maintaining a normal lifestyle becomes impossible, leading to isolation, frustration, and a diminished quality of life.
As the World Health Network develops public health messaging materials for its Long COVID Awareness Campaign the WHN Campaigns and Broadcast Teams have worked closely with members of the Long COVID community. The long haulers working on this campaign have the following to say about crashes, PEM, and persistent fatigue.
“Living with Long Covid and suffering from PEM in particular, makes the condition even more complex. If I try to live my life as normal, I will absolutely be having constant crashes, because I am living outside of what my brain and body can handle now after the infection. I MUST cut back SO much in order to find my “energy envelope” to know what my limits, keep a log of everything I do to know where my energy is going, and learn to say ‘NO’ to my conscious wish to keep pushing myself, because if I do, I know I will end up bedridden for weeks.Constant crashes ma cause permanent organ damage so it’s crucial that we avoid them. When I crash, my pain is as if my body had been dropped in acid – everything burns – my brain doesn’t have the capacity to even understand words sometimes, and I feel as if I have been poisoned and my body is being crushed by an elephant sitting on me. The fatigue can be so severe I sometimes have to crawl to the bathroom because I can’t stand up – let alone walk. It’s a hell that took me a full year to understand and it’s a lot of work to manage. What’s worse, it’s beyond comprehension for most people, so often I am gaslit, mocked and abandoned because they assume it’s all in my head and I am not trying hard enough when nothing is farther than the truth.”
“Crashes can come from both using physical energy to do simple tasks of basic activities of daily living to mental tasks, as well like checking email, taking a phone call or zoom call, paying bills & managing finances, trying to self advocate for healthcare & disability especially when being denied – something I am experiencing currently.”
“Most people don’t understand what we mean by ‘fatigue.’ This isn’t just ‘I’m tired at the end of a long day.’ This is equivalent to ‘in the middle of midterms, when I hadn’t slept for a week and can’t think or speak straight from exhaustion, I ran a marathon, and now I can’t move any part of my body either, and yet my test on obscure advanced medical theory is tomorrow so I can’t sleep tonight either.’ This is ‘I am the most hungover I have ever been, I can’t move any of my limbs and somehow they all feel like they want to vomit.’ This is ‘I’m so tired that I worry I might not survive it.’ If you have anybody in your life, including yourself, that relies on you being able to think, socialize, move, advocate, drive, or any other action, you cannot afford to risk this. Do what you can to protect yourself. It is worth it.”
It’s important to understand that Long COVID can affect anyone, regardless of age, health status, or the severity of their initial COVID-19 infection. The challenges of living with crashes, persistent fatigue, and PEM are not just minor inconveniences; they can be life-altering. The severity of these symptoms highlight the importance of taking Long COVID seriously and supporting those who are dealing with its long-term effects. Whether through helping promote and support public health measures to prevent infections, advocating for research, or providing resources for those affected, addressing Long COVID is crucial for the millions suffering worldwide. Further, the severity of these symptoms serve as a salient reminder to practice layering protection and infection prevention. The best way to avoid Long COVID is to avoid infection and reinfection from SARS-CoV-2.
