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

Robert DeRosathought he was invincible before contracting COVID-19 over a year ago. But the memory loss, intense headachesand other health problems havemade the long-hauler unrecognizable, even to himself.

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

Long-haulersexperience 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 otherssearching for validation to know long-haulerslike 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

DeRosasaidhe 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 fogand 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 unableto string together a cohesive resum.

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 withrehabilitation for the pains, anxietyand insomnia that still haunthim.

But his journey to find support in health carehas been frustrating, he said,because"alot of doctors don't get it."

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

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

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

He saidsome doctors might say symptoms are psychiatric or anxiety-related instead, whenthey'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 suchwork, he said.

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

"The bottom line when you look at it, there areno 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 themobile appStronger Togetherto help connect survivors with like-mindedviews and symptoms.

Acknowledging long-haulers' stories

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

He's taughtin Hamilton, Singapore and Japan, and saidthe 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 whilesurrounded by plants in a Walmart garden centre. It was afirst sign that life was moving forward.

A recent U.K. study indicates23 per cent of vaccinated long-haulershad reduced symptoms. DeRosa saidhe's hopeful,but is staying wary and "doesn't want to get ahead" of himself.

Healso warnedagainst 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."