Living with long COVID: Canadian woman, 53, opens up about 'excruciating' symptoms years later: 'I feel fear and terror'

Four years after COVID-19 was declared a global pandemic, Yahoo Canada spoke with several people still living with long COVID. Read their stories HERE.

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.

When Hoi Bing Mo gets one of her headaches, it can sometimes feel like freezing nails sinking into the top of her skull. Other times, it can feel like a band tightening around her head, moving across her eyebrows and cheeks.

The pressure from her headaches can migrate from her shoulders to the base of her neck, pushing towards the top of her head. This is sometimes referred to as coat-hanger pain, because of its pattern.

As someone who has suffered from migraines in the past, Mo described these new headaches as something that felt a thousand times worse. When she went to the emergency room at Eagle Ridge Hospital in Port Moody, B.C. in late August 2022, it wasn't for her milder symptoms, like her cough or fever, but for the "excruciating" headaches.

"I feel fear and terror because I haven't found any painkillers that work for these headaches," Mo told Yahoo Canada. The headaches have been a constant ever since that day.

Mo, 53, now knows that what she is suffering from is long COVID. After infection, her symptoms never got better like they do for most people — they worsened.

She has since been diagnosed with: post-exertional malaise (PEM), where symptoms worsen after minor physical or mental exertion; postural tachycardia syndrome (POTS), a condition where one's heart rate spikes when they stand up from a seated or lying position; a histamine intolerance and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), causing extreme fatigue, among other things.

"Long COVID has turned my life upside down," Mo said. From working a full-time job as an events coordinator, hanging out with a handful of solid friends and living a fairly active lifestyle, Mo admitted she feels at a loss. It's been an incredibly lonely and isolating experience, she explained. "I miss being involved."

'Devastating' impact to her career

Before Mo contracted COVID-19, she worked for the city of Burnaby, B.C., planning events for the city like Sounds Like Summer, where musicians perform outdoors. She also organized six volumes of PechaKucha night where speakers come in and share themed stories.

Apart from doing yoga about three times a week Mo was taking swing dancing lessons at St. Michael's Hall in Vancouver. She looked forward to taking classes where she'd learn how to lead the dance, too.

Now, Mo finds herself getting intense heart palpitations when she tries to respond to an email. Trying to go for a walk can trigger her symptoms, or a "crash," she said.

"I'm now on long-term disability which is devastating to me," Mo admitted. A good day for her would be feeling a semblance of normalcy, without the headaches, without the fatigue that leaves her bedridden, or without the pressure in her chest and heart palpitations. "[My] chest pain got so severe that I thought I was experiencing a heart attack one night and ended up in the ER."

In January 2023, Mo was accepted as a patient at a long COVID clinic. She was looking for answers on how to manage her symptoms, especially her headaches. But soon after she was accepted, the clinic was gradually moved to an online, educational website, rather than a physical place where she could see the doctors. "They didn't know what to do with all of us," Mo claimed.

Still, she continues to find information where she can. Whether it be in a long COVID support group, or YouTubers sharing tips and tricks to manage symptoms. More than anything, she wants to learn how to manage her ME/CFS, or chronic fatigue syndrome, so she can regain her energy and return to work.

'Desperate' for normalcy

When Mo felt some reprieve from her symptoms in September 2023, she was seeing an occupational therapist in the hopes of going back to work in the winter. But after experiencing another crash, it was clear to her doctors and herself, work would be out of the question until she felt more stability.

"I knew physically I wasn't able to return to work in my condition," said Mo. "And then I had all this fear: 'Do my coworkers think that I'm faking this? Am I still going to have my projects when I go back… Are they going to trust me again? Am I going to be the same person again when I go back? Will they want to work with me again?' I have all these fears."

For now, Mo takes it day by day in her home, with her 31-year-old son supporting her.

She admitted explaining her sickness to him was difficult, because he didn't understand how debilitating it could be. "Now he's been extremely understanding and helpful," she said.

Being able to form new friendships — particularly with those who are also experiencing long Covid — has brought some joy to Mo, she claimed, adding she never expected to make new friends past her 40s.

"[We're] desperate… to regain some sort of normalcy, to rejoin our communities, our work, our activities and to enjoy the most basic things in life like going for walks and socializing without collapsing the next day."

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