'A shadow of myself': Patient urges doctors to listen to struggling COVID-19 long-haulers

Robert DeRosa thought he was invincible before contracting COVID-19 over a year ago. But the memory loss, intense headaches and other health problems have made the long-hauler unrecognizable, even to himself. 

DeRosa, 38, said his fight to get better also comes with a struggle to be heard and recognized by health-care professionals.

Long-haulers experience symptoms of COVID-19 long after contracting it. DeRosa, a Hamiltonian who moved to Atlanta just before the onset of the pandemic a year ago, said he wants others searching for validation to know long-haulers like him understand. 

"I just don't want people to feel alone," said DeRosa. "People need to know that we're out there, and that this is real, and that we need support."

A year of spiralling symptoms

DeRosa said he experienced "two months of hell" — extreme fevers, body aches and chills — after getting sick. Later in the year, he lost hair and three teeth. 

Now, he struggles with asthma, brain fog and a fluctuating heart rate as he sits and stands. He's been hospitalized multiple times this year.

"I was just not the person that I was," DeRosa said. He went from writing a massive thesis for his graduate degree, he said, to being unable to string together a cohesive resumé.

DeRosa has also had to balance and navigate the financial costs. 

"I can't live like this anymore," he said. "I cannot. I'm like a shadow of myself." 

'A lot of doctors don't get it'

A team of physicians — including a fatigue doctor and pulmonary doctor — helps DeRosa with rehabilitation for the pains, anxiety and insomnia that still haunt him. 

But his journey to find support in health care has been frustrating, he said, because "a lot of doctors don't get it."

The long-term implications of COVID-19 aren't known. But doctors and researchers say DeRosa isn't alone in what he's experiencing.

Dr. Sonny Kohli, an intensive-care unit (ICU) doctor at Oakville Trafalgar Memorial Hospital and an internal medicine specialist, said tests underway for research purposes, and not accessible by the general public, are revealing "very significant impairment" among long-haulers.

However, he added, tests for these patients in hospitals can get "normal" results. This complicates things for doctors who aren't aware of the new research, hold steadfast to their results and "aren't willing" to consider unusual diagnoses. 

He said some doctors might say symptoms are psychiatric or anxiety-related instead, when they're not.

'You start to doubt yourself'

For long-haulers, "it takes a toll on you when you're not being validated," said Kohli, and "you start to doubt yourself." 

With variants of concern affecting more and younger people, said Kohli, resources in Ontario aren't being allocated to manage "long COVID," although doctors in the United States are referring long-haulers to specialty centres there. Clinics in Montreal are also doing such work, he said. 

The U.K.-based National Institute for Healthcare and Excellence has published guidelines for working with long-haulers, but Kohli said they miss a huge part of the puzzle.

"The bottom line when you look at it, there are no treatment guidelines because they don't know how to treat anything yet." 

That's why connecting with a community is crucial, said the doctor, who has created the mobile app Stronger Together to help connect survivors with like-minded views and symptoms. 

Acknowledging long-haulers' stories

DeRosa said he's grateful for a community of COVID-19 survivors who have found each other over social media. He's also thankful for the kindness of strangers, and the people in his life who have reached out to him. 

He's taught in Hamilton, Singapore and Japan, and said the people he used to help are now the ones helping him. 

DeRosa said long-hauling can be isolating, and it's tough to manage expectations — especially when he doesn't want to let anyone down.

"It's not that simple," he said of rehabilitation. "It's going to be a process."

He recently got his first dose of the Moderna vaccine while surrounded by plants in a Walmart garden centre. It was a first sign that life was moving forward. 

A recent U.K. study indicates 23 per cent of vaccinated long-haulers had reduced symptoms. DeRosa said he's hopeful, but is staying wary and "doesn't want to get ahead" of himself. 

He also warned against taking your health for granted, and is encouraging people to be there for others fighting this unfamiliar battle. 

"Just acknowledging someone's story is so powerful for someone who has struggled to tell it" — someone "who has to make sense of it on their own."