Falling victim to medical gaslighting

Triptych of an exhausted woman sleeping
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.
xo

 

Life: Cancelled

Author Ashley Kalagian Blunt with rainbow bookshelvesI’ve been really sick.

It’s not COVID, just a bad stretch of my normal chronic fatigue.

Usually I try to find the humour in things. I use humour to cope with life. But over the past few years, life seems to be working hard to beat the humour out of me.

I started doing stand-up comedy in 2015, and was doing it regularly in 2016, just figuring it out. When I told people this, they often said, ‘That’s so brave.’ For me it wasn’t brave. It was raw fun. Even when no-one laughed – and there was definitely at least one occasion where I spoke for five minutes to a stone-silent audience – I had a good time.

Then one day I found myself dreading going to stand-up. It felt like too much effort to get myself out in the evening, to memorise a new bit. So I didn’t go. At the time I thought I’d abruptly lost interest in this thing that I had really loved. Looking back, this is when my chronic fatigue symptoms really started to ramp up. Stand-up was the first thing the illness took from me.

A friend texted on Friday. ‘You have been an expert at social distancing for a few years now — any tips to share? How are things down under other than a TP shortage?’

And I tried to think of something funny. But I couldn’t.

‘Look, honestly, the only tip I’ve got is to understand how much grief is part of it,’ I wrote. ‘If it’s just two weeks, maybe not so much. But if you’re forced to stay home and miss things that you’ve looked forward to, miss time with friends who you might not have much time left with, miss events that you may have spent months planning, grief will be part of it. Naming it helps.’

For the past four weeks, I’ve been feeling too unwell to function, falling behind, then getting just well enough to almost catch up before I fall behind again. I’ve slipped back to where I was about a year ago, health-wise.

Meanwhile, the world has become as unpredictable as my health. Everything seems precarious. Is there any point planning future events? On the rare occasion I’m well enough to go out with my friends, it safe to do so? Should I barricade myself behind a metre-thick wall of toilet paper?

I know I’m not the only one who feels this way. For people like my husband, it’s COVID-19. For me, it’s COVID-19 to power of three years of CFS. For you, maybe it’s worse.

I sort of want to give up. Just go to bed, pull my nine-kilogram blanket over my head and stay there until I’m well, until society stabilises. I’m worn out.

Stay well, wonderful people.
xo