Kate Weinberg's experience with long Covid informed her latest novel, There's Nothing Wrong With Her. Photo: Supplied
When writer Kate Weinberg began her "jagged descent" into long Covid, it felt like a "full body poisoning", she says.
Weinberg, a journalist, podcast host and author, has turned her personal ordeal of living with long Covid into her latest book called There's Nothing Wrong With Her.
She had to navigate not being believed by both doctors and the people closest to her, and at times that led her to even doubt her own experience. The novel captures the surreal state of invisible illness, she told RNZ Saturday Morning host Susie Ferguson.
Her own experience of long Covid was one of "staggered decline", she said.
"In my case it was really more like a full body poisoning. I felt like there was metal running through my veins.
"The idea of getting up was just impossible, or if it did release me for a while, and I would be able to get myself downstairs and make a cup of tea. I would then crash and really pay for it."
Vita, the main character in There's Nothing Wrong With Her, is also struck down with a mystery illness. She is confined to the "pit" and plagued by ghostly visitations.
"She's trapped in her bed with this mysterious, undefinable condition, and her life has gone awry."
When her own health started to recover, Weinberg realised she wanted "to make good on what felt like, this incredibly dark and lost time," and make it the basis for her second novel.
When she was diagnosed with long Covid, little was known about it, she said, and her recovery came in fits and starts.
"This is one of the awful things, the illness, for me, at least, felt like it was a sort of gas-lighting process, because whenever I tried to understand it or define it, new symptoms would pop up, and the old symptoms might disappear for a while, and I'd start to question my own sanity within it.
'Recovery was also a similar process where it was not linear at all. It was it was bumpy, and there were periods of relapse where I would feel every bit as unwell and think that I'd gone right back down to the bottom."
It felt, at times, hopeless, she said.
"You think 'am I ever going to get out of this? Is this just an endless spiral?'"
For centuries, post-viral syndromes have been misunderstood by the medical profession, she said.
"Especially in women, this idea there was nothing wrong with her."
In the novel, the symptoms are "all in Vita's head".
"That it comes from her nerves or is some kind of depression."
Vita is visited by ghosts, and ghosts from Weinberg's past came to her while she was sick, she said.
"It was a little bit like having the door open to your own lost property office, bits of my past that I'd not really completely come to terms with or confronted, or people I'd lost, seemed to kind of float up into the sick room a lot and traumatic events.
"And it was as if all of these characters and bystanders, people that I normally sort of shoved off into the corners of my life while I got on with my busy day, just came in to haunt me."
The writing of the novel helped her recover, she said.
"Sorting through my own narrative of what had happened to me, and then sidestepping into this different place where Vita is dealing with her own love life and relationships and job pressures."
All of those things allowed Weinberg to "exit that place I'd been in".
"I am someone that needs to confront things and stare them in the in the face, in order to properly liberate myself from them.
"And I think writing the novel was just that."
Photo: Penguin random House
The best stories, she said, came from not avoiding yourself.
"A writer once said to me, you need to put the pen in the vein, you need to really get to the core of yourself to create something that's of value.
"It's been such an intense experience to me, I think I would have felt like I was cheating if I hadn't really tried to get to grips with it and turn it into art."
She is better now, but said she baulks at the word.
"It's a word that I have a little bit of superstition around because I spent so long getting to a place where I thought I was better and then slipping back into illness, that it felt like I didn't want to count my chickens and say I'm completely recovered.
"I am nearly fine now, I get the occasional flare up, I've rebalanced my life to live slightly more carefully and in a slightly more limited way in certain respects ... and in many ways, good and beautiful things have come out of it."
