As a writer, I spend my days trying to craft believable, satisfying narratives. As a COVID-19 “long-hauler,” I have given up trying to find an internal logic to the story of my illness.
As we now know, thousands of people are suffering a range of bewildering and debilitating post-COVID-19 symptoms that do not follow any predictable breaks or intervals.
Happily, the news about the emergency rescue package for the UK’s cultural industries, including my own, was followed by the UK’s National Health Service (NHS) announcing an online COVID-19 rehab service, promising a “personalized package of aftercare.”
It is a promising start, but we are still nowhere near understanding the long-term effects of this vicious, capricious virus.
I fell sick in mid-March. My diagnosis of “mild” COVID-19 meant that I avoided going to hospital, but still needed three trips to an emergency room as the illness peaked. Frustratingly, my tests revealed the “normal” blood, heart, lung and organ function typical of long-haulers.
My body, though, told me otherwise. For six weeks, it felt as though every cell had been poisoned, accompanied by constant chest pain and shortness of breath.
During May, I recovered from the worst of it, only to be felled again by a bout of post-viral fatigue that is almost as bad as the disease itself.
Before falling ill, I had enjoyed a stable, long-term relationship with my body. I nourished it with good food, exercise and sleep, and it did more or less what I asked it to. Now it has turned on me. My heart, which had gone quietly about its vital work, like so many NHS and care workers’ hearts, has become a showgirl, nightly pirouetting on the stage of my ribs.
I dread going to sleep, which usually occurs sitting up, to avoid the crushing lung pain that comes when I lie flat.
Months of viral gastroenteritis have left me with mild colitis of the bowel, necessitating a strict dietary regime. My head aches, my skin prickles and my fatigue covers me like a weighted blanket stitched from dead dogs.
It is hard to resist the pull of tragedy in the absence of medical answers. Last week, I gave in and spent all day in bed howling.
My husband, now required to dress, wash and partially feed me, looked at me with resigned sorrow.
“I don’t know how to help you,” he said. I did not know either — nobody did — hence the gnawing fear and depression, an ongoing symptom in itself.
Thankfully, this low point of incapacitation has eased a little. Certain things are helping: a nutrition and supplement regime, acupuncture (good, but expensive) and total rest (free, but not good for the self-employed).
As I move from bed to sofa and back again, I learn that Gwyneth Paltrow has designed a candle that smells like her orgasm. If I had the energy, I would do the same, but I am not sure it would sell. My COVID-19 candle has top notes of gluten-free oatcakes, middle notes of humid sheets and a base note of despair.
Yet compared with many others, I am doing reasonably well. I do not have small children, dependents or live alone. I have work lined up for when I am physically stronger — I can at least write by using a transcription app.
Countless others struggle to manage crippling post-viral symptoms without help. We do not yet know if post-COVID-19 recovery is worse according to gender, ethnicity or age, but we know that those who are poor or disadvantaged socially suffer disproportionately.
Jobs are be lost, long-term care is needed. Will long-haulers be eligible for state financial support and free specialist medical care beyond the 12 weeks offered by the NHS? Can we avoid the battle faced by chronic fatigue or myalgic encephalomyelitis patients, our closest cousins, who have historically found it difficult to get diagnosed, treated and recognized as even having a bona fide disease?
We long-haulers are also at the mercy of the medical establishment, which has not always responded to our dilemma with sympathy.
George, a friend and fellow long-hauler, fought with her doctor for weeks to get a chest MRI-scan, knowing that her lungs were not working properly. The scan revealed that she has fibrosis — scarring — in her lungs. The potential long-term effects are sobering, as the lungs feed the other organs with oxygen. Like so many of us, she has yet to understand the impact on her future life.
Those treated by sympathetic doctors like mine might fare better, but this virus has baffled scientific experts at every turn and it is the same with recovery.
Forget the predicted second wave of COVID-19 — we long-haulers are the second wave. We need reassurance and help now.
It cannot be left to the charity and voluntary sectors to drive research and support, as has happened with those with chronic fatigue.
The NHS program is a good start, but the UK government must also pledge help and recognition of the havoc wreaked by post-COVID syndrome. Above all, it must ensure the new narratives that are emerging from the long-haul frontline are disseminated widely, particularly to the young, who have been endlessly told they are not at risk.
Our stories show this to be palpably untrue — plenty of young long-haulers who were physically fit before a mild attack of COVID-19 are now partially disabled.
Our post-COVID-19 narrative might not have an end, but as we attempt to resume normal life, grieve our dead and lick our wounds, it should act as a cautionary tale to those healthy people who believe the worst is over. For others, it might just be beginning.
Jemma Kennedy is a novelist, playwright and screenwriter.
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