When our seventeen-year-old son Nick developed Long COVID after suffering a pulmonary hemorrhage in 2022, like any parents, we were devastated. But for us it hit harder. History was repeating itself — and it was something we had dreaded since having children.
Back in 1987, my husband Frank came down with an illness that resembled the flu. We thought nothing of it but three months later he was still ill with profound exhaustion, cognitive difficulties and muscle pain. Then I came down with the same symptoms.
Six months later we both remained housebound and mostly confined to bed. At the time, our general practitioner diagnosed us with post-viral syndrome. She gave us no advice other than, “You’ll get better eventually.”
Except we didn’t. Being housebound in the 1980s, pre-internet, pre-food delivery, and at the height of the sneering “yuppie flu” hysteria was hard. Friends and family were bombarded with reports of myalgic encephalomyelitis (ME) being a fashionable fake illness. Doctors and pundits decided that sufferers were an intolerable bunch of malingerers who expected too much of life and were just “a bit tired.” As comedian Ricky Gervais put it in his sell-out 2007 Fame tour, ME is the diagnosis where, “I don’t feel like going to work today.”
This media portrayal had a real impact. Our support network fell away and our doctor became less sympathetic and started treating us as if we were mentally ill, not physically. Like most people with ME at the time, we were offered anti-depressants with the implication that we were just depressed. There were no treatments available and no other support. Worse, trying to get financial help through social security proved to be almost impossible: ME was not accepted as a disability. The inevitable response to sharing this diagnosis was, “You don’t look ill,” or, “How do you know you’re ill?”
Frank was twenty-five when he fell sick, I was twenty-three. We were at the start of our careers in London both working for non-profit community organizations, and had recently moved into a flat together — just beginning a new life as a couple. We felt far too young to be chronically ill.
But seeing Nick become ill at seventeen, we now realize how lucky we were to have those few years as healthy adults. We enjoyed university, moved to the capital, and started jobs. We had traveled all over Europe and made a wide circle of friends with whom we shared our love of the London art and theater scene.
All this was lost to our son, Nick. It has been painful to witness him go without so much at a time when he should be starting out on his own life’s adventure. He was accepted to several top universities in the U.K. but had to reject them all. He is now mostly housebound.
At first, he was terribly depressed by the shock of suddenly becoming disabled. He suffered physically: difficulty breathing, severe exhaustion, and muscle pain. It’s hard enough to deal with these symptoms in middle and old age, but as a young man, so much harder. To make it worse, he was cut off and left behind by friends who moved away to go to university. He was and is, completely isolated.
Frank and I also struggled. I cried for weeks with grief for what had happened to Nick. I simply could not believe that the three of us were now chronically ill.
Before we made the decision to have children as two people with ME, we researched the risks as much as we could. We were terrified that the disease could be passed on. We consulted a professor who was working on a diagnostic test for ME in Scotland at the time and he advised us that ME wasn’t inheritable. “Any children you have are safe,” he had said.
We felt reassured and decided to go ahead. But soon stories emerged of whole families being afflicted with ME and we feared that the professor had been wrong. Inevitably, we spent our two boys’ childhoods worrying that every virus they caught could turn into something more sinister. But by the time they had reached their teens we had started to relax and even dared to think: we’ve done it, they’re healthy. They are, after all, safe.
And then COVID-19 came.
We were anxious again. When vaccines became available, the U.K.’s National Health Service said children and teens weren’t eligible unless they had specific health issues. We had to fight to get our boys vaccinated. Having done so, we felt more confident that they would escape the more serious aspects of COVID-19. But in the end, vaccination did not save Nick.
But after a year into his Long COVID symptoms, the pain seemed to lessen for all of us. Nick made a decision: he was not going to put his life on hold until a treatment for Long COVID came along, because who knew when that would happen? He started a small business buying and selling cameras online and took up the jazz piano, sitting up for very short stints between resting.
He has only an hour or so of energy a day, but these activities give Nick a focus. I think we were able to pass on this important lesson of being chronically ill: that to have and achieve a goal each day, however small or insignificant it might appear to others, is how you get through this.
Perhaps having two sick parents has some benefits. We were able to pass on our hard-won knowledge of post-infectious disease. Nick quickly became adept at pacing, at avoiding doom-scrolling online, at taking the long view and trying to get the absolute most out of every minute of any activity he was able to do.
I think we were able to pass on this important lesson of being chronically ill: that to have and achieve a goal each day, however small or insignificant it might appear to others, is how you get through this.
Of course, there is inevitable friction and frustration. We have to hold back from acting as experts in what he is going through and allow Nick to find out for himself how to handle this existence, which is so vastly different from what he had expected from his future. We have to stop our experiences of the last nearly four decades becoming the lens through which he sees his own situation.
Still, our story of non-recovery is not exactly uplifting for Nick. He can’t help worry that he too will never recover or go into remission. We reassure him that we live in different times, that attitudes to chronic illness have changed massively and invisible illness in particular is far less stigmatised. Elevators in public spaces have notices that read: “Not all disability is visible.” Posters in pharmacies in the U.K. offer details of the local Long COVID clinic.
The severe disbelief Frank and I experienced in the past has abated. Not one medical professional has been anything but sympathetic to Nick and no one has suggested that he is pretending to be ill. However, this has not been the case for everyone. Many people with Long COVID report not being taken seriously. Many people are also let down by family and friends and remain very isolated.
Most importantly, we know for sure what virus triggered Long COVID, making it easier to research than ME and other similar “mysterious” diseases. Biomedical research is being done. We remind Nick daily that recovery for him, though it may take time, is very much on the cards.
At a recent meeting with an eminent professor of immunology, Frank voiced his frustration that patients with chronic illnesses like Nick often get forgotten after an initial flurry of investigations. Instead of our experience of almost total medical neglect, the Professor turned to Nick and said, “Well, I’m taking an interest now.”
We remind Nick daily that recovery for him, though it may take time, is very much on the cards.
Linda Fuchs is the author of ‘Surviving ME’ (by Joyce Fox). She is based in Cambridge, U.K. and is currently working on a novel.
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