New book gives people suffering from Long COVID a voice

OAKLAND, Calif. - We spent months talking about COVID and as the pandemic rolled on, it seemed like that was all anyone talked about. Even though COVID is still around, most feel like it is over. There's only one problem, it's not anywhere close to being done for millions of Americans suffering from Long COVID. 

"What needs to be told is that there's so many of us that we're not able to work, or we can't work full time," says author Mary Ladd. "We struggle with housing, with getting medical care. There isn’t a cure. There isn’t a treatment. There are a lot of medical professionals who are doing their best, and they really aren't sure how to approach Long COVID. So, I wanted to bring those themes to life, that there are a lot of commonalities, regardless of whether you have 12 symptoms or three that keep coming back."

According to a recent survey by the CDC, 18 million Americans have suffered from Long COVID and 8.8 million say they currently have the condition, which is defined by ongoing or new symptoms present four to twelve weeks after the infection. Mary Ladd has been dealing with symptoms since she got COVID in February 2022.

"It was bad from the start…right when I was infected. It was one month later where it still seems [that] all I want to do is sleep. And yet, even when I’m sleeping, the sleep is disrupted…and I’m fatigued. And so there really hasn't been a break," Ladd explained.

As she faced symptoms, she also searched for support. Ladd is a breast cancer survivor, and in 2019 she wrote about her journey in her book called "Wig Diaries." It was then that she also found a writing community of support in a magazine called Wildfire. 

"The information in the way I feel when I read Wildfire, I wanted to find that for Long COVID, and it doesn't exist. And so, I thought, well, why don't I do it?" said Ladd.

That started a year-long journey to create this book called "The Long COVID Reader" - writing and poetry about 45 long-haulers.  In it, Long Island resident Nikki Stewart writes, "My brain is foggy on a good day with many words dancing out of reach." 

UC Berkeley doctoral student Andrew King muses, "Is it the sane or the insane who don't talk about the tragedy in front of them?"  

Artist and teacher Pato Hebert describes "Temple and frontal lobe throb the most painful ongoing symptoms set in for good last summer a completely fried nervous center my mood board is like a secondhand shop."

It is an anthology of varied experiences and stories, and Ladd writes "I hope their words can hammer home the point that anyone can experience unpredictable extended illness following one single COVID-19 infection. This book is by and for the long haul, our community."

People across the country tell their stories, and each is different, but each describes what has become an invisible illness. 

"I think that the writing is so good, and the stories are so interesting that that's what sort of draws people in," says Ladd. "It is tough reading, but, you know, each of us are one infection away from joining the Long COVID club."

It is valuable information about a condition doctors are still trying to understand. Since the book's release, Ladd has presented it to researchers and held readings.

Ladd says people have been coming forward from around the world asking for the chance to tell their stories.

"Overwhelmingly the contributors have felt relief to at last be able to tell their story, to get their story out into the world, and to be a part of a community. That's a really important piece," she said.

She says it's important to be visible, and critical to know you are not alone.