My name is Erin, I don’t have a long COVID.
I don’t know how I would know if I knew.
Twenty-five years ago, in elementary school, I fell in love with mono because it spread in my social circle. Mononucleosis, also known as “kissing disease” because it can be transmitted through saliva, is an infection caused by the Epstein-Barr herpes virus. It can also be spread through coughing, sneezing, and sharing alcohol and food.
Not surprisingly, this is common among teenagers and young adults.
Most of all, the mono made me tired, and even more tired after the infection was over. Getting out of bed seemed like a daunting task. Every morning I was sick, in pain, and under the weight of invisible weight. But I looked good. But after the sharp phase of the mono, no one believed me.
My friends came back in a few days or weeks. But am I? Promoting high school is often the pet of a star student and teacher, and I studied with other noisy people because I was tired and couldn’t get out of bed until 10 in the morning.
The accusations of laziness and the resulting shame are true. But even though the symptoms were foggy, there were more. I felt as if I were living in a different reality, suffering in an invisible hell that no one else could see or understand. My symptoms and character were always questionable.
I was finally diagnosed with chronic fatigue syndrome, which was accompanied by severe fatigue for six months or more, which could not be explained otherwise and did not help to relax. Other symptoms may include pain, swollen lymph nodes, digestive problems, chills and sweating, muscle weakness, shortness of breath, dizziness, and heart palpitations.
Sounds like a long COVID, eh?
There was no treatment, and I left the army as if nothing had happened, fearing that I would be accused of negligence again. Mentally, I struggled with the weight of others’ judgments. I was raised by the Boomers of the Midwest – lethargy was a sin, so I stumbled. But while my friends were running, playing in the orchestra, and attending parties, I felt as if I were barely caring as I walked through the misty swamp filled with molasses.
In time, I learned to get out of bed — even when my body seemed to be burning — and to cover up my symptoms so that others would not feel sorry for what they could not do.
As you can see, what I have experienced and still experience is very similar to what some Long COVID patients have experienced, says Dr. Alexandra Brugler Yonts, an infectious disease specialist at the National Children’s Hospital in Washington, D.C., runs her pediatric Long COVID clinic.
Chronic Fatigue Syndrome “is actually the best parallel we have for Long COVID because their biggest factor – fatigue – is push-ups and crashes, post-exercise pain,” he says, adding that patients are often “a little better”. One day it will be normal, the next day it will be completely gone. ”
“Unexplained chronic disability”
Researchers are vying to know exactly what Long COVID is, with some noting that the effects or consequences of illness or injury are not unique to any COVID. Other viruses, such as SARS, West Nile virus, polio and H1N1 flu, are also known to cause long-term damage that can lead to CFS and / or other illnesses, experts from the Massachusetts Consortium, led by Harvard Medical School, said. Media on pathogen readiness.
Such post-acute infectious syndromes or PAISs “have long been associated with unexplained chronic disabilities” and may share a common cause, the authors of a recent article announced. nature“Unexplained post-acute infection syndromes,” position.
All of these conditions are characterized by “impatience to exit, disproportionate levels of fatigue, neurocognitive and sensory disturbances, flu-like symptoms, restless sleep, myalgia / arthralgia, and a large number of common non-specific symptoms.”
“There is an initial level of fatigue, and as circumstances progress, some may have more energy, some solar, and others less,” says Yont. Difficulties can sometimes lead to fatigue, but not others – immediately or the next day. The problem should not be physical – it can be mental or emotional.
Worse, sleep often does not cure fatigue.
Like Long COVID, treatment cannot be developed until the cause is found and the cause of CFS is still unknown. At present, this diagnosis of rejection – laboratories – is usually normal, and there are only hypotheses about what caused this condition.
One of the lessons learned from Long COVID is the need for clinics to treat complex conditions such as CFS and Long COVID, which require multiple specialists, Yonts said. The lack of direct treatment does not mean that symptoms cannot be managed or that patients will not be able to benefit from referral to physicians in various disciplines.
This situation is “very difficult and time consuming for the general practitioner,” he says. “I don’t think it has traditionally had good results, but I think it will benefit. I hope we are moving towards that world. ”
Nearly a quarter of a century has passed
How long can prolonged COVID last in patients?
This is now a million dollar question.
“Of course, there are people who are infected [with COVID] “Patients with chronic fatigue syndrome have been ill for decades.”
“I think some people can be healed somehow,” he says. However, the generally accepted minimum duration for long-term COVID is “six months and on average much longer”.
For me, it’s been nearly a quarter of a century. Although life is easier than it was in the days after my mono-infection, the situation is still unresolved.
I don’t think that will ever happen.
I have good and bad days. Feeling good is the rule, not the exception. Many mornings I get out of bed and feel like I have the flu. Most of the time I feel good, it’s normal, says Yonts. But some afternoons I find it difficult to open my eyes.
I need my son; Caring for her makes me get out of bed every day. Yes, I had a baby and one of them was very tired, so I kept it that way. I graduated from high school, got a full college scholarship, fell in love, dropped out of a full scholarship, bought a house, got married, divorced, fell in love again, bought another house – normal things. I graduated with a bachelor’s degree online and these days I’m devoting more energy to myself. I am currently working on four master’s programs. I was one of 20 reporters selected around the world for a prestigious medical reporting scholarship last year.
I’m tired, but I’m still close to work.
Sometimes I wonder what it’s like to feel normal, to fall asleep, and to wake up.
I don’t think I’ll ever know.
But I know happiness. I know love. I know the satisfaction of my hard day. I’ve done all the general stages for adults, and then some – from what I’ve heard, more than most of my high school classes in a small town.
I wish I had some life-changing advice to share with those who have become accustomed to the world of Chronic Fatigue Syndrome after COVID, or perhaps trying to survive it.
Although only 25 years have passed, all I know is that I have lived with her. I can share that – and remind people that it’s sustainable.
There is life with CFS, even if we never know the next life.
This story was first featured on Fortune.com