What Globe readers want you to know about living with long COVID

As the coronavirus pandemic enters its fourth year, The Globe asked readers living with long COVID to share their experiences. More than five dozen people told us how the condition has affected their lives – from their ability to work to how it’s changed their social and family life – and what they wished Canadians understood better about long COVID.

Respondents reported fatigue, brain fog, postexertional malaise – which worsens symptoms after even minor physical or mental activity, shortness of breath, sleep disturbance, joint and muscle pain, headaches, heart palpitations, anxiety and dizziness among their symptoms.

The people who shared their stories live with debilitating symptoms every day. Many feel trapped, isolated and fear how it will affect the rest of their life. Making things more difficult is that specialized care for the 1.4 million Canadians living with the condition is scarce.

Their stories are raw and insightful. The Globe is including only first names of some respondents due to their workplace rules around speaking to the media or because they fear reprisals.

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Laurie Woelfle, 61

Calgary

Some days I don’t have enough stamina to do anything. I can’t lift my arms over my head so showering and blow drying my hair is tough. I have special-needs twins and after getting them off to program in the mornings I have to go back to bed.

Some days I can only supervise them getting ready from the couch while laying down. I have been on disability since May, 2021, with a three month attempt at gradual return to work that failed.

Natalie, 41

Fort Nelson, B.C.

I have been off work since mid-December, 2022 with no income or financial help for short term disability. It has been nothing short of horrific. This demon virus chokes me in my sleep and there are days I can’t get out of bed.

I have a master’s degree in health-focused social work, I’m a primary care social worker and therapist and now I can’t even remember simple words. Something as simple as writing an e-mail feels impossible sometimes. It has taken more from me than one virus should be able to. My life will never be the same.

There is no “healing” from this, it’s about learning how to manage the symptoms and wash down the bad news sandwich the best you can for some resemblance of life.

Rick Cole, 72

Port Colborne, B.C.

I am retired, but before realizing I had long COVID in the fall of 2020, I had run a daily Twitter feed that was tied to a weekly podcast, 50 Years Ago In Hockey. I have had to give up both.

I am unable to maintain the focus and think through the research and recording processes. I have a great deal of difficulty composing tweets and scripts. I tend to get overwhelmed in crowds, or driving in heavy traffic.

I wish people understood what we go through. We look fine, friends tell me I am just fine, but inside I know what the issues are.

Rachel, 24

Toronto

I began to realize I had long COVID at the beginning of February. Brain fog manifests in difficulty concentrating, memory problems and speech issues. In turn, this affects drafting e-mails, presenting materials in meetings and conversing with clients. Routine tasks that once took 10 minutes now take over half an hour. Fatigue following exertion like climbing the stairs in the house takes a toll on my mental energy.

I now need to nap at lunch to function. I can only shower once every three days, as opposed to every day, due to lack of energy. I can’t cook, clean or do laundry and must rely on my mom to do the household chores.

I used to walk five kilometres every other day. Now, I can only walk for five minutes or stand for 15 minutes before feeling utterly spent. While I may appear to look fine on Teams or in passing, I still haven’t recovered and continue to not feel well.

Candice Makhan, 48

Toronto

I can no longer work, am now housebound and mostly bed-bound. My husband looks after all the household chores and cooking. This can happen to anyone. I was previously active, successful and healthy. This has ruined my life and I’m running out of hope.

Thomas Belsheim, 33

West Vancouver, B.C.

For the past 16 months I’ve been couch-bound, can’t work, can’t read, can’t look after myself and do groceries or laundry. I wish people know how serious it is.

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Melinda Maldonado, 38

Toronto

My life has been turned upside down. I used to be a healthy-eating, often-exercising machine at the peak of my career. I ran 10 kilometres every other day and enjoyed yoga and dog walks.

I am now completely housebound and rely on my husband for all household tasks and support with the activities of daily living. I had to stop working in April, 2022, and while I am still employed I am now on long-term disability. Showering is a ton of work, I have a stool in the kitchen and a stool in the shower that used to belong to my 90-year-old grandpa.

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I cannot tolerate screens so I only communicate with friends by voice note. When I’m feeling stable I can manage a short walk around the block or some light stretching done lying down. However, I have had so many relapses due to postexertional malaise that being stable is a luxury. I now have to think of myself as a person living with episodic disability and basically live my life like I’m in my 90s.

Being on my feet is challenging for more than a few minutes so I tend to only assemble simple meals that others have prepared. The only time I venture out is when I can’t avoid an in-person doctor’s appointment and my husband takes me in a wheelchair because I can’t walk more than about 10 minutes. Socializing is taxing so I’m also cut off from the world and probably have more interaction with health care practitioners than loved ones.

Bev Conquergood, 60

Penticton, B.C.

I cut down to four days of work a week, but I still struggle with fatigue everyday. My goal every week is to just get through my work days. I need to pay my bills. I long to taste something delicious, or smell the rain. I don’t have the energy to visit friends or even have a phone conversation. I cannot plan ahead because I am likely to need to cancel.

Adriana Patino, 38

North Vancouver, B.C.

I used to be a high-level competitive swimmer, with a job I loved and full social life. Then I got COVID in December, 2020. I can’t work, and I can only do two to three things in my house and I am bed-bound the rest of the day. I can’t have visitors because it’s a challenge to have several conversations at the same time, and my brain gets very fatigued very quickly.

Basically, other than my fiancé and my mom who comes to see me, I am completely isolated. I still can’t work, I can’t even leave my house because of neurological issues. Long COVID has destroyed my life completely. It’s at the very least life altering, potentially life destroying.

Sandy Choiniere, 34

Blainville, Que.

I am a mother of a 20-month-old girl and I have issues holding her in my arms while standing. I don’t always have the energy to play with her. To keep the house as clean as I would want it to be is impossible. I work from home and organize my own schedule so I can rest when I need to. I wouldn’t be able to do a regular job where I need to be at the office all the time.

I got COVID in June, 2022, and realized it was long COVID after 12 weeks. My social life has been affected because I don’t have the energy to go to social events or family reunions. I’ve been judged for that by my in-laws because they don’t understand long COVID. I used to belly dance and I really enjoyed it, but I am not able to any more.

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Kevin Kroeker, 57

Vancouver

I have reduced my work hours by 50 per cent because my energy, stamina and strength are not adequate to my job as a motorcycle riding instructor. I also need quick access to a washroom to deal with intermittent bouts of diarrhea.

Since getting COVID-19 in March 2020, I have spent three years doing many tests with a medical team comprising my family doctor, respirologist, internist, cardiothoracic surgeon, gastroenterologist, neurologist, rheumatologist, ophthalmologist, a pain management specialist and others. After many suspected causes being ruled out, I’m finally left with the same good news/bad news message I’ve heard over and over: “The good news is, you don’t have the terrible condition we thought you did. The bad news is, we don’t know what you have.”

Around November of 2022, my internist finally concluded, “We think it’s likely a post-viral syndrome, like long COVID or chronic fatigue, and it will either get better on its own or it won’t. I’ll see you in a year.” I’m exhausted and discouraged and remain pessimistic about the future.

Nadine Hardiman, 63

Prospect Bay, N.S.

I first got COVID in March, 2020, realized I had long COVID by the fall of that year and got an official diagnosis in November, 2021. Long COVID requires all of my energy to be able to do anything while standing. I cannot exercise. I am retired and find resting and pacing help alleviate symptoms. You give up hope after a while and get tired of telling health professionals over and over what is going on while they give helpless stares and no answers. Basically, you are alone on this. Really alone!

Ashley, 31

Barrie, Ont.

Long COVID has affected all areas of daily life. In 2020 my goal was to wake up and walk to get myself water or go to the washroom alone. That was a win. In 2021 my goal was to keep myself motivated. In 2022 it was to not kill myself. In 2023 it’s about learning to live with chronic illness and letting go of my former self.

I went through long COVID at the start of the pandemic, when it was poorly understood, as a young woman and a PhD student in biology. But life can continue after long COVID. My world looks so different and I’m finally finding peace with it all. I want to share a message of hope. Long COVID survivors are warriors and I hope one day people recognize its validity.

These responses have been edited and condensed for length and clarity.