Since getting diagnosed with chronic fatigue syndrome in 2017, one of the most helpful things has been learning specific terms that describe aspects of the illness.
I think this is partly because the existence of a given term is proof I’m not imagining what I’m experiencing. It’s real, and other people have experienced it – so much so that there’s an established name for that experience. A few examples are orthostatic fatigue, temperature dysregulation, and alcohol intolerance.
Recently I learned a new term that describes an aspect of my experience of illness perfectly. Disturbingly, I learned it while reading not about CFS, but about covid-19.
Despite the impression my social media accounts might give, I’m still really struggling with the fatigue. In January, I started the Lost Hours Project to try to quantify how much the fatigue still affects me. I track each hour I lose to fatigue – in other words, any daytime hour that I’m too sick to function.
Lost hours 2020
January: 89 hours
February: 110 hours
March: 119 hours
April: 87 hours
May: 63 hours
June: 90 hours
July: 60 hours
Keep in mind these don’t include time that I am functioning, but at a slower (more frustrating) speed than I would when I’m well. Often things take me twice as long as they normally would because of physical or cognitive fatigue, or both. But there’s no clear cut way to track this.
The 110 hours I lost in February are nearly 25 per cent of an average adult’s waking hours. In other words, I spent an entire week of that month in bed. (You might be thinking, gosh, I’d love a week in bed! Until you realise that I spent that week feeling like I’d been run over by a cement truck, and still had my usual work and personal commitments piling up.)
Chronic fatigue syndrome isn’t just feeling tired or run down. It’s exhaustion combined with a roulette wheel of symptoms including body aches and joint pain. I wouldn’t wish it on anyone.
Which is why I’ve been so unsettled reading about the covid-19 ‘long haulers’.
More and more articles are coming out about people suffering a long tail version of covid-19. They’ll feel fine for a few days, and then suddenly be too exhausted to work or function, with returned symptoms like shortness of breath and a hoarse throat. For others, the fatigue has settled in and not left.
“Before this, I was a fit, healthy 32-year-old,” a woman interviewed for the Atlantic said. “Now I’ve been reduced to not being able to stand up in the shower without feeling fatigued. I’ve tried going to the supermarket and I’m in bed for days afterwards. It’s like nothing I’ve ever experienced before.”
Ugh, I know how this woman feels. I’ve been there.
“This virus has ruined my life,” she continued. “Even reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown—yoga, bread baking—are beyond the realms of possibility for me.”
An article from SBS describes a man in New York who will feel fine for a few days, then suddenly become overwhelmingly tired and short of breath.
I wasn’t surprised when the article quoted his physician saying the man’s “ongoing fatigue is similar to what has been documented in other illnesses that cause chronic fatigue syndrome.”
“Scientists aren’t quite sure why this happens, but … it might relate to an injury to a part of our cells called mitochondria, which are responsible for generating energy.”
The physician “emphasised it was important for people experiencing these ongoing symptoms not to succumb to ‘medical gaslighting‘ where other people or the patients themselves attribute the illness to anxiety.”
“This is not in people’s heads. This is what people live every day.”
From extensive experience, it’s very difficult not to medically gaslight yourself. It’s useful to have a term for this, since I still tend to have this sort of thought distortion. I don’t necessarily attribute the illness to anxiety, but I often tend to deny how sick I actually am. Particularly if I have a few good days in a row, I start to think I can’t possibly be as sick as I’ve made out. I must be exaggerating.
But I’m not. And the covid-19 long haulers aren’t, even if they’re trying to convince themself that it must be anxiety, or even their imagination – because that would be far less frightening that the reality of having chronic fatigue.
The Atlantic reports that thousands of people are now experiencing long tail covid-19, with early surveys estimating that 60 per cent of them are aged 30 to 49.
Take care, stay safe! And if you’re sick, try not to gaslight yourself.