STORY: "On May 22nd, she took her own life in our bedroom, when I went to pick my son up after a playdate.”
Filmmaker Nick Guthe says that before his wife Heidi Ferrer, a television writer, died by suicide at age 50, she was in so much pain she could not walk or sleep - symptoms he blames on long COVID.
“After three weeks of barely sleeping more than an hour a night, you know, her brain was really, really compromised. And like prisoners of war who are kept awake, it affects their cognitive ability. And she became extremely despondent and hopeless.... My wife didn't kill herself because she was clinically depressed. She killed herself because she was in excruciating physical pain.”
Guthe now advocates for sufferers of long COVID and says he is contacted regularly by those whose loved ones have turned to suicide.
“These people are desperate. They are completely desperate. I know how desperate my wife was. She was… you know, if there was anything that could have taken her pain away, her physical pain that she was in from the neuropathy in her feet, she'd still be here. I believe that firmly.”
Although much of the world may be moving past the pandemic, for millions of people with long COVID, the suffering remains. Their condition – with symptoms ranging from extreme fatigue and brain fog to shortness of breath, headaches, and pain - is often discounted by doctors, and has no proven treatment.
Thirty-four year-old Lauren Nichols, a logistics expert for the U.S. Department of Transportation in Boston, said her struggle with long Covid has lasted two years – and that she often considered ending her life.
“I was fantasizing about ways that I would kill myself for a while. I wrote a will two separate times. There was a fire escape right outside of my bedroom window and I can't tell you how many times I was alone in that room by myself or I was just contemplating and thinking through how to do it. And, I think the thing that people don't really understand about suicidal ideation, I think a lot of people are like, well, if you didn't do it, then, like, it's all just for attention. And the thing is, it's not.”
As a board member for the long COVID advocacy group Body Politic, she knows of more than 50 people with long COVID who have killed themselves.
She said she worried most for her own safety when a bout with pneumonia left her isolated and her depression turned to apathy.
“And it was when the apathy that set in, that's when I could sense I was in danger, because I would find myself not caring if I woke up the next day. I was in so much pain that I quite literally fantasized about the million ways that I would end my life because I wasn't being believed.”
Efforts to study long COVID and suicide risk are still in the early stages. The long COVID advocacy group Survivor Corps polled its membership in May and found that 44% of respondents with long COVID had considered suicide, up from 18% a year ago.
Nearly 150 million people worldwide are estimated to have developed long COVID during the first two years of the pandemic, according to the University of Washington's Institute for Health Metrics and Evaluation.
While many recover, around 15% of long COVID patients still experience symptoms after 12 months, according to the IMHE.
“So this headache never went away. I felt fatigued. I felt drained all the time. And the loss of smell, too, didn't come back, so.... But I didn't know what it was.”
London nurse Ruth Oshikanlu, who’s 48, said doctors first thought her symptoms were due to menopause… and that it took many months before they finally diagnosed her with long COVID.
As in the U.S., the UK has ramped up efforts to study the disease, including through a government advisory group focusing on COVID and suicide.
And while Oshikanlu herself did not think of ending her life, she understands the pain of those who do.
“My anxiety is that if we don’t give more support we will find many more people end their lives by suicide.”