There’s a story in Greek mythology where Orpheus, a gifted poet and musician, travels to the underworld to rescue his newly wedded wife, Eurydice, who died after being bitten by a snake.
They are both allowed to leave Hades under one condition: Eurydice must walk behind Orpheus, and he must not turn and look back at her on the way out.
I told my partner this story late one night. He hadn’t heard it before, but he saw the parallels with our story right away.
I caught SARS-CoV-2 at a work Christmas party in December 2021 a few weeks after my partner and I had moved in together. We were traveling from Sydney to Melbourne when we heard that someone at the party had tested positive.
We were among the first people in Australia to get this disease that had caused millions of deaths worldwide. I was terrified.
At that time, Australia’s state governments had very strict quarantine rules so we couldn’t cross the border and go home to Sydney.
My partner wanted to care for me while I was ill, so he stayed in the same house as me instead of quarantining separately. A few days later, he fell ill, too.
I had classic cold and flu symptoms, was breathless, and lost my sense of taste and smell.
My partner’s Covid-19 symptoms were much more severe than mine. He had a fever and extreme muscle aches. We called the ambulance out when he was struggling to breathe, but the paramedics decided that he did not need to be taken to the hospital because his blood pressure, heart rate, and oxygen levels were okay.
We had to stay in Melbourne for 16 days until my partner had recovered enough to fly home. It was such an ordeal that my diary of the experience was published by the national media.
Two and a half years on, my partner has severe Long Covid, with fatigue, post-exertional malaise, brain fog, dysautonomia, sensory hypersensitivity, aphasia, paralysis, and low social tolerance.
He used to be extremely fit. He would cycle to work and back and go for long runs in the rain. But he hasn’t been able to do that since getting Covid-19.
For an athletic corporate lawyer who relishes hard intellectual and physical work, Long Covid is a special kind of torture.
In some ways, it’s fortunate that I’m down here in the underworld with him. I can feel my way through the darkness with first-hand experience of the terrors he is facing.
After getting Covid-19, my symptoms of fatigue, breathlessness, brain fog, congestion, and post-exertional malaise never went away. I still can’t do the cycling, jogging, or social activities that I used to, and I can only work part-time.
The thing that sends my partner back to Long Covid crash hell is social activity — particularly with the people he loves.
Sometimes it only takes a few minutes of the wrong kind of social strain and it’s like he’s been mauled by a three-headed dog.
He goes from holding a conversation perfectly well to turning grey, losing his balance, wobbling, and crashing into walls. If he doesn’t lie down within seconds, he will slide down the wall and collapse on the floor.
My partner relapsed at the start of this year. He lost all the gains he had made in the past two years, going from 40 hours of work each week to zero. His ‘rock bottom’ involved the most intense sensory overload he’s had since getting Covid-19.
His migraine was so bad, he was howling in pain. He was nauseated. His skin was on fire. He told me he had lost that feeling of hope that he’d been clinging on to since getting Covid-19. Hearing this from the most cheerful person I’ve ever met was devastating.
I realized we needed to change the way we were operating. I wrote a list of all the things he was doing, and identified the activities that were using up energy without being restorative.
Then, I identified the tasks that I could do for him — cooking, cleaning, laundry, shopping, and facilitating medical appointments — and from then on, I did all these tasks or delegated them to others.
For this to be sustainable and not breed resentment, I needed breaks — or at least the illusion of taking breaks.
It slowly dawned on me that we needed to educate our families on how they could make their love accessible for someone who, even on his best days, could not socialize for more than a few minutes.
When you have lost the ability to generate hope for yourself, family support provides that hope for you. Even if you don’t recover, they still love you and they are doing okay. And that’s hopeful.
I asked both our families to go out of their way to share happy, normal family messages that did not require a response from my partner.
When you have lost the ability to generate hope for yourself, family support provides that hope for you. Even if you don’t recover, they still love you and they are doing okay.
The family chats filled with pictures of dogs being dopey, smiley holiday photos, and the latest sport gossip. Our freezer was suddenly chock-full of homemade meals. Our breadbox was crammed with baked goods.
The house filled with helpful sprites volunteering to cook, do the dishes, water plants, vacuum, scrub the porch tiles, mow the lawn, dust, and fix things.
It was embarrassing at first, but weeks passed, and we fell into a routine.
In the myth, just before he exits the underworld, Orpheus looks back, and his wife plummets down into Hades again.
That’s a mistake I refuse to make. It’s natural to want to connect with the people we love, but that impulse can be harmful during a Long Covid crash.
It’s now been 12 weeks since we made all these changes at home to support my partner. He’s no longer bed-bound. He can go for a few short walks, sit in the sun, and work from home for a few hours each week.
We’re going to maintain support for as long as he needs. He will slip into the underworld again. Crashes are inevitable. But now we know the way out of its cold, dark halls.
Felicity Nelson is a science and medical journalist based in Sydney, Australia. She has written for Nature, ScienceAlert, Veritasium and The Guardian. @frogsandstars
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