COVID-19 long-haulers: Hamilton residents share their stories

“Brain fog.”

That’s how Flamborough’s Ruth Castellanos describes how she feels most days.

“Words that I’ve used my whole life, sometimes, I just can’t find them,” she said.

“Brain fog.”

That’s how Flamborough’s Ruth Castellanos describes how she feels most days.

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“Words that I’ve used my whole life, sometimes, I just can’t find them,” she said.

Castellanos, who is 38 years old, has been sick since the middle of May. At first, it seemed like a respiratory infection with a persistent cough and fever.

Naturally, she was tested for COVID-19. It came back negative. So, she went about her life, hoping to get well soon and return to ‘normal.’

Little did Castellanos know, she would be waiting for ‘normal’ five months later.

“In June it just got worse,” she told InTheHammer. “I started having terrible muscle pain where it felt like every single joint in my body was swollen but it didn’t look swollen. I was so tired all the time. I would have to lie down after doing the simplest task.”

Life was pretty active for the college instructor and avid gardener prior to her illness.

“I was always busy,” she said. “I was always out in the garden or walking the dogs or just out and about.”

But it all came to a grinding halt this summer.

“I need help to get out of bed, and to shower, some days,” she said.

When she turned to her family doctor for answers, she was told she just needed to get back into the swing of things and get out and get moving.

“They gave me medication for inflammation,” Castellanos said. “But it kept getting worse. I started getting throbbing headaches where all I could do was hold my head in my hands. Nothing would help the pain go away.”

After visiting at least four doctors and specialists and after undergoing numerous tests a specialist finally confirmed that she was suffering from post-viral syndrome from COVID-19.

It is believed that Castellano’s COVID-19 test returned a false negative, she said.

Constant Pain

For Hamilton’s Shannon Mitchell-Taylor, who also suffers similar symptoms as Castellanos, the headache has been the worst.

“It’s an unrelenting pain,” they said. “There’s just an intense pressure in my head and in my ears.”

Mitchell-Taylor, who is 40, fell ill in March alongside their partner and child, with a fever and a cough.

“I was by far the worse off,” they said. “But I couldn’t get a [COVID-19] test at the time because I hadn’t travelled or been in contact with someone who had.”

As weeks went on and the fever and cough abated, persistent weakness and piercing headache continued to plague Mitchell-Taylor. They also experience symptoms of vertigo which still prevents them from getting behind the wheel of a car.

Again, numerous visits to the doctor, referrals to specialists and many tests later, Mitchell-Taylor said doctors determined they were suffering from post-viral symptoms, but couldn’t say for sure that it was COVID-19.

“I’m usually a very active person,” the pre-school teacher said. “But now I just feel so tired and checked out all the time.”

Neither Castellanos nor Mitchell-Taylor has been able to return to work.

Not alone

They are among a significant number of people across the world — who have had a confirmed COVID-19 diagnosis or not — reporting long-term symptoms from the virus.

The pair actually connected through a Facebook support group, COVID Long Haulers Support Group Canada, which was started by a woman from Oakville and has thousands of members who have similar stories.

The group shares stories and information about COVID-19, as well as providing guidance and support for people trying to come to terms with the long-term health impacts of the virus.

One of the common concerns among members of the long-haulers group is the struggle to obtain a diagnosis.

“Everyone shares the frustrations of not being believed and getting dismissed by the medical community because of lack of knowledge,” said Castellanos.

“I really had to push for some answers,” she said. “I met a lot of reluctance from medical professionals.”

Ruth Castellanos has been sharing her story so that others can learn about the long-term effects of COVID-19 – Photo: Ruth Castellanos

Emerging field of study

That may be because medical professionals are just starting to understand more about this particular aspect of COVID-19.

“This is a rapidly emerging field,” explained Dr. Dee Mangin, David Braley Chair in Family Medicine and Professor at McMaster University’s Department of Family Medicine.

“A lot of work has been done on this in the UK, but it’s only fairly recently that this has become public.”

The term for what Castellanos and Mitchell-Taylor describe is ‘Long COVID.’

“Symptoms include fatigue, shortness of breath, cough, muscle aches and pain, chest heaviness, and heart palpitations,” Dr. Mangin said.

“People will report having good days and bad days in a fluctuating course and will sometimes suffer, understandably, from anxiety and depression.”

Brain fog, what Castellanos and Mitchell-Taylor have both described as still being an issue for them some days, is less common but is described, Dr. Mangin says.

“It’s not one of the more common symptoms,” she said. “But the brain is very sensitive to any insult to the body.”

Dr. Mangin, who also curates and builds content for the Hamilton Family Medicine website, an evidence resource for Hamilton’s primary caregivers, said the first articles about Long COVID she’s shared to the site have only been up for the last few weeks.

She said longer-term symptoms have been found in patients who suffered from other coronaviruses, like SARS and MERS, but it’s still early days in understanding COVID-19 and its impact.

“We’re still in the learning phase,” Dr. Mangin said. “We’re less than a year down the track so we have to live with the uncertainty for a while.”

Learning phase

For instance, researchers have yet to determine just how long someone can suffer from Long COVID.

“Ten per cent of people [with COVID-19] will have symptoms beyond one month,” Dr. Mangin said, explaining that this is considered ‘Long COVID.’

The number of COVID-19 cases that suffer symptoms beyond that drops dramatically to 2 per cent by 3 months – but those people are out there, she said, and there is not enough data and experience yet to determine how long they might suffer symptoms.

It’s also too soon to determine whether or not Long COVID is indiscriminate in who it affects.

“It would be premature to say that we can predict any one person is susceptible,” Dr. Mangin said.

In the meantime, physicians are starting to understand that Long COVID is a reality and how to best help patients work through the symptoms.

“The relationship with the primary care team is so important,” Dr. Mangin said.

“Clinicians and patients are very much learning together on this particular journey – that’s why patient stories like these [Castellanos’ and Mitchell-Taylor’s] are really important.

“They [clinicians] walk with the patient through this journey and it’s a slow and gradual recovery.”

Online support groups, Dr. Mangin suggests, could be a helpful source for people suffering from long-term symptoms of COVID-19, especially in providing comfort in the knowledge that there are other people out there going through the same thing.

Finding support

For Castellanos, the Facebook group has been a lifeline.

“I couldn’t sit here and suffer by myself anymore, so I reached out on social media,” she said. “If it wasn’t for that group, I wouldn’t have gotten half the help I have.”

But still, Castellanos and Mitchell-Taylor remain in a holding pattern, managing their symptoms and hoping for the day when they wake up and are themselves again.

“One of the hardest things about all of this is that I can’t contribute to my family,” Mitchell-Taylor said. “It’s too physically demanding.”

“I’m functioning at maybe 30 per cent of what I used to be, some days, far less,” said Castellanos. “I just want to get back to myself.”

For now, though, both hope that their story will show people how important it is to respect public health guidelines to help prevent the spread of COVID-19.

“They might seem silly to some people,” said Castellanos. “But it can be devastating to someone who might contract it.”