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‘Is this my life forever?’ The unexpected — and frightening — impact of Long COVID on young

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Manish Saini
Manish works as a Journalist and writer at Revyuh.com. He has studied Political Science and graduated from Delhi University. He is a Political engineer, fascinated by politics, and traditional businesses. He is also attached to many NGO's in the country and helping poor children to get the basic education. Email: Manish (at) revyuh (dot) com

They are not the image that typically comes to mind when one hears of lives devastated by COVID-19.

A 23-year-old early childhood education student who went from getting straight As and juggling six classes to barely being able to keep up with two.

A 27-year-old communications professional who could once polish off a press release in a few hours — but now needs a whole day.

And a 28-year-old previously “extremely healthy” office worker and mom who spent her spare time running and being active with her kids, but now experiences constant exhaustion, sore muscles and other health issues that have forced her to go on medical leave.

The stories on their own would be notable for highlighting the impact COVID-19 can have on the lives of young people who were mostly healthy before getting infected. What further sets Hannah Lohnes, Hobson Lin and Jessica Sewell apart is that they are long haulers, still experiencing complications from COVID-19 anywhere from five months to more than a year after their initial illness.

“We’re now 11 months into this and I’m still dealing with the symptoms every day … some days it feels absolutely impossible,” said Lohnes, who got COVID-19 at age 22 in November 2020.

At first, she experienced severe shortness of breath and was in bed for about three weeks before her symptoms progressed to pain and numbness in her extremities, headaches and brain fog two months in.

She still has reduced senses of taste and smell as well as extreme fatigue. She can only focus for about 10 minutes at a time before needing a break, which has affected her studies.

“As that brain fog kicks in as my brain gets more tired, it causes more physical exhaustion symptoms as well,” Lohnes said. “It kind of becomes this whole roller-coaster of trying to deal with every symptom in your body at once. And it just gets to be too much.”

Long COVID, officially defined by the World Health Organization in October as “post COVID-19 condition,” is still a somewhat mysterious ailment. Further study is needed to pinpoint risk factors for individuals and the causes are multifactorial and complex.

“Long COVID is not as much about the effect of the virus as about other dysfunctional things that happen in your body as a response to the virus,” explains Dr. Fahad Razak, the lead author of an Ontario COVID-19 Science Table report released in September called “Understanding the Post COVID-19 Condition (Long COVID) and the Expected Burden for Ontario.”

What has become clear is that Long COVID can cause more than 200 symptoms across 10 organ systems, with the most common afflictions being “profound and unusual” fatigue, shortness of breath, muscle and joint pain, as well as cognitive impacts including brain fog, depression and anxiety.

The long haulers who spoke to the Star, who are all from the Vancouver area, also reported symptoms such as sensitivity to light and sound, a distorted sense of taste and unexplained allergic reactions.

It’s believed about 10 per cent of people infected with COVID-19 will have persistent effects 12 months later.

What’s striking about Long COVID, when compared to the virus itself, is that it seems to be a greater threat to the young and healthy. And people with mild acute infections or no symptoms at all can still develop Long COVID.

And there are clear indications it has the potential to become a chronic condition for individuals, with implications for employment, family care and long-term disability.

“Unlike the initial infection when we saw this strong gradient, it was very clear that risk jumped dramatically with older age for severe infections,” Razak said. “With Long COVID it’s much flatter. You can get a 20- or 30-year-old infected and now the rest of their life is (potentially) going to be affected by Long COVID.”

It comes with a kind of crushing weight for Lohnes, who got COVID-19 shortly after moving out of her parents home. She has rheumatoid arthritis, but said it’s mostly been in remission, which spurred plans to get back into sports and exercise post-pandemic.

But the perpetual fatigue means she now has to plan her days around activities such as a family visit or a simple shower, knowing she’ll be bedridden for the rest of the day.

“It’s definitely a bit of a grieving process that you go through,” Lohnes said. “I mean for any age, but especially looking at it from 22 when I was diagnosed and now 23, it’s like mourning the life that you could have had — that you may not be able to have anymore.”

There are days Hobson Lin wakes up and does not recognize the man in the mirror.

The recent university graduate and corporate communications writer lives in a haze. Words don’t come to him the same way anymore. He sometimes finds himself confused about what he was just doing, having lost his train of thought.

His days usually consist of a series of medical appointments, from his psychiatrist to his physiotherapist, or lying in bed and taking on freelance public relations assignments to cover his bills.

Since he tested positive for COVID-19 last March, the symptoms never really went away. The brain fog is constant and he experiences extreme fatigue, to the point where any kind of physical activity takes a toll.

“I have days where 90 per cent of the day I am on my phone or my computer in bed basically trying to do the least,” Lin said. “Because I’m just so gone.”

He says his senses of taste and smell have been also permanently altered — the other day he had to spit out a perfectly good egg that he thought had spoiled.

“You feel betrayed by your body,” he said of the psychological impact of Long COVID.

What’s at times equally frustrating is the sense that medical professionals don’t know how to deal with Long COVID. Initially, some doctors expressed skepticism about whether the condition was real or imagined.

While there’s more recognition now, the treatments are essentially a process of trial and error — Lin is overweight, which doctors say could be a factor in his enduring symptoms, while also putting Lin on Continuous Positive Airway Pressure Therapy (CPAP) to see if sleep apnea is a factor.

“They’re basically trying to scramble and cope with all the symptoms with what they know,” Lin said. “But at the same time you’re really just a research experiment.”

On top of Long COVID, Lin is also recovering from a car collision, plus the stress of having to turn down writing assignments because he just can’t keep up.

He said the erosion of his quality of life has made him wonder if life is really worth living.

“I have had suicidal ideation because combined with my chronic pain and everything, and the sense of hopelessness, and the lack of support and the gaslighting … where do we go from here?”

It’s a feeling that is highly relatable to Jessica Sewell. She said she was in good health when she tested positive for COVID-19 in May 2021. Many of her symptoms were neurological; sensitivity to light and sound, dizziness, insomnia. She compares it to having a concussion.

In June, when she thought the illness was dissipating, she started to experience more peculiar symptoms. If exposed to hot or cold temperatures, she would get hives.

She started to experience swelling in her mouth and throat when she would eat and there wasn’t any particular food she could connect it to.

“It was like I was allergic to the act of eating,” Sewell said.

She has found some success in reducing the negative reactions by taking antihistamines (she takes about four doses a day of different allergy medications) and sticking to the same six foods every day (boiled veggies, white rice, chicken, ground beef, broccoli and apples).

The sensory overload she experiences makes it hard to drive for more than five minutes and the mother of two is on medical leave from her job at a British Columbia health agency.

One of the greatest challenges is the feeling that the condition is unfixable. Early in her meetings with doctors, she said she was frequently told she was only experiencing anxiety and depression in response to the initial acute infection.

“I’m not anxious nor am I depressed — but I’m becoming anxious and depressed because I have a chronic illness that nobody knows what to do about,” Sewell said.

She said it’s promising that more research into the condition is emerging and medical professionals seem to be taking it more seriously. The Facebook group COVID Long-Haulers Support Group Canada, which Lohnes and Lin are also members of, has been a source of comfort for the trio as it shows they’re not alone.

But the options for treatment are still lacking.

“There’s still a feeling of, OK how do I get better?” Sewell said. “That’s a very scary thing to feel at 28 when you know you’re supposed to have your whole life ahead of you and your kids need you. It just keeps going back to are they going to be able to help us … is this my life forever?”

When asked if Long COVID could potentially be a lifelong chronic condition, Razak, with the Ontario COVID-19 Science Table, said “the simple answer is yes.”

“It’s definitely possible and that is the most frightening potential legacy of these infections,” he added, noting that followup studies for SARS, which caused an outbreak in Toronto in 2003, found people were still experiencing symptoms 10 years after the initial infection.

The societal implications are huge, especially for the labour force and economy, not to mention the health-care system. Razak cited a recent paper that found roughly 10 to 12 per cent of people infected with COVID-19 could not return to work 12 months after their initial infection.

Of the 88 per cent who did go back to work, one quarter had to do so in some kind of adjusted capacity.

“If you combine those two numbers we’re talking about a third of people (requiring) some kind of reduced or completely reduced work capacity … the societal impact of this is enormous.”

For Lohnes, Lin and Sewell, Long COVID has laid bare the fragility of their young adulthood. While they were previously primarily concerned with pursuits like raising a family, dedicating themselves to their careers or pursuing higher education, they now reflect on contending with this condition for the rest of their lives.

“I think it’s really important for people to understand that that sense of security that you have in being young is a little more fragile than you believe,” Lohnes said.

“I would just say that you don’t know how it’s going to affect you. And that any moment your life can change.”

(This story has not been edited by Revyuh staff and is published from a syndicated feed.)

Image Credit: Getty

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