Loss of taste, chronic illness, depression: Canadians share their long COVID stories

Last week Daily Hive put a callout to our readers to share their personal journey with long COVID.

We received responses from people all across Canada who had experiences ranging from loss of taste to debilitating chronic illness.

We heard stories from teachers to runners to people who frequented MMA gyms who can now barely climb a flight of stairs without running out of breath. Others shared their experiences of countless doctor’s visits, stacks of medication, and what feels like the never ending search for effective treatments for their ailments.

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And the common feeling running through all of these stories? A sense of helplessness and depression at the seemingly everlasting effects of that one case of COVID they caught.

Now, as mask mandates lift and other public health measures ease amid the rise of Canada’s  sixth wave of COVID-19, the country is seeing a resurgence in cases, which could mean a new cohort of possible COVID long haulers.

Here are the stories from Canadians who are already feeling the repercussions of long COVID.

Many either completely lost, or now have a distorted sense of smell and taste

“I have had to relearn and teach myself how things now ‘taste’ to me, which is devastating as I am extremely passionate about food and cooking. Certain things taste close to ‘normal’ where other things, like dairy products, taste completely off. Dairy products specifically taste like how a wet dog smells. It’s awful. Cola products taste like dirt and deep-fried foods I simply can no longer enjoy at all as the taste is so off-putting. My smell is actually worse than my taste, which can be quite hazardous as I am not able to smell when food is spoiled or if, for instance, there was a gas leak. I have now adjusted, but at first it was extremely detrimental to my mental health and found myself heavily depressed.”

Heather Steiner
Age: 26-34
Contracted COVID: November 2020

“I experience [a] distorted sense of smell. Up until now, there’s this persistent burning gas smell in my nose and sometimes cigarette smoke smell which triggers my migraine on a heavy scale.”

Jouie
Age: 35-44
Contracted COVID: January 2022

Others developed asthma, or their asthma was worsened

“I’ve developed asthma and basically had the worst cough/exhaustion for the first three months of 2022. Still taking a daily inhaler.”

Anonymous
Age: 19-25
Contracted COVID: December 2021

“I had mild asthma previous to COVID and afterwards it was extremely dangerous and unmanageable. I was in and out of the hospital for shortness of breath for months. Now, I’m still on all sorts of crazy asthma medication and when I try to sleep at night, I can’t breathe properly. The mechanics of it work fine, but I don’t feel like I’ve taken a breath of air and as such have been on heavy medication like prednisone ever since. COVID is no joke.”

Anonymous
Age: 35-44
Contracted COVID: January 2020

And, of course, there are the extreme long COVID cases, with some experiencing debilitating chronic illness

“After my initial infection I continued to have lingering symptoms. I have seen countless doctors and had many tests, but no one has any answers even two years later. I continue to have cognitive issues where I feel concussed, dizziness, blurry vision, tinnitus, post-exertional malaise, food intolerances, and constant tingling in my hands and feet. The fatigue is disabling and I have now been officially diagnosed with chronic fatigue syndrome as well as mast cell disorder. I am only able to work two days a week. The long COVID clinic has no treatments in Canada, so I have been forced to seek costly treatment in the [US]. My life has been forever changed.”

Nicole
Age: 45 – 54
Contracted COVID: March 2020

“I was first diagnosed in October 2021 and my symptoms were aggressive until December. In January, I was diagnosed with pneumonia and was treated accordingly. Following that, my symptoms have persisted until now, which include extreme fatigue, lethargy, cough, and the worst of all it triggered my childhood asthma. I am now on inhalant corticosteroids.”

Rosanna Tinio
Age: 35-44
Contracted COVID: October 2021

“I was a runner, very healthy, active mom. Now, I look forward to sleep every day and am depressed knowing I’ll be replaying the same day again. I have had nine visits to the ER for throat swelling, dizziness, trouble breathing, numbness, wrenching gut pain. The average day I feel like I’m being choked all the time while enduring a blinding migraine and numb, freezing limbs.”

C Smith
Age: 45-54
Contracted COVID: March 2020

“I’m being treated by four specialists and an incredible family doctor trying to find solutions and answers. I am currently on six medications (though all these months I’ve been on at least 15 different ones), I take 20+ supplements and I am on an anti inflammatory diet, with no gluten, dairy, alcohol or sugars. This has been hell inside a nightmare. I don’t wish this upon anyone.”

Adriana Patino
Age: 35-44
Contracted COVID: December 2020

“Even with all of my vaccines, my heart has been very damaged…I can no longer control my heart beat and have had constant stabbing pain for months. Doctors have no idea why or what will help, but they have told me it’s not an uncommon side effect, so I know there must be more people whose lives have been halted by long COVID heart complications. It’s hard to walk, talk, and live.”

Anonymous
Age: 26-34
Contract COVID: January 2022

“Before testing positive, I thought COVID was some sort of joke or hoax. I tested positive in January. Throughout my quarantine period, it felt like a regular flu. Two weeks after testing positive, it got way worse. Wheezing, difficulty breathing, inflamed body causing skin irritations…endless amount of phlegm, which I never had before. While asleep, I gasp for air. I have random rashes all over my body, which I’ve never had before. My doctor says these are all symptoms of ‘long COVID.’ I am waiting on a prescription for some strong anti-inflammatory medications which may help some of my conditions. That medication is my only hope.”

Anonymous
Age: 19-25
Contracted COVID: January 2022

There are a lot of things COVID long haulers used to do that they can’t do now, including work

“I call in sick almost every week with chronic infections, trouble breathing, feeling generally unwell. Used up all my sick days and it’s only April. My boss is also not very happy with me getting sick so much. Don’t really have much of a choice, either risk losing my job or getting even sicker.”

Anonymous
Age: 19-25
Contracted COVID: April 2021, December 2021, April 2022

“I can’t do much now except browse through Netflix.”

Sean Zielinksi
Age: 35-44
Contracted COVID: December 2021

“I went to the gym four days a week, and regularly did HIIT cardio training. Now, I struggle to jog for more than a couple of minutes. I can no longer swim (which was a big part of my life). This lung damage has completely changed my life. It has taken a lot from me, and now, over a year later, I still have not been able to get proper testing done to get lung treatment. I am on a very long wait list.”

Anonymous
Age: 26-34
Contracted COVID: January 2021

“I was a pretty healthy 26-year-old, played sports four to five times a week and attended an MMA gym eight times a week. I’m now 28 and have chest pains every day, shortness of breath, still can’t smell or taste fully and I’m constantly congested and couldn’t dream of being as active as I used to be — sometimes struggling to just walk.”

Anonymous
Age: 28
Contracted COVID: September 2020

“Run. Paddle board. Wash my hair in the shower (I have to bathe now because I get vertigo when my hands are above my head!). I used to be physically able to go for a half hour run, now I can’t stand and lift my hands! I can EITHER make food for my family or clean up after dinner, but not both.”

Anonymous
Age: 45-54
Contracted COVID: June 2020

Naturally, long COVID has taken a toll on many Canadians’ mental health

“It’s very stressful because I don’t wanna rely on medications for the rest of my life at this age. It makes me depressed that my health deteriorated so much. I’m sick of feeling like this, but at the same time I can’t remember what normal feels like. It just feels like endless doom… feeling unwell every single day.”

Anonymous
Age: 19-25
Contracted COVID: April 2021, December 2021, April 2022

“I have mental health issues that I never had before. Inflammation in the brain can cause depression, anxiety. Mostly having something they don’t know how to treat with no end in sight for the sickness is terribly depressing.”

Tom
Age: 26-34
Contracted COVID: Spring 2021

“My mental state is getting worse each day. I’m frustrated, angry and very depressed.”

Carol Gross
Age: 55+
Contracted COVID: December 2021

If you’d like to share your experience with long COVID fill out our online form below, or email us at [email protected]. The answers will be used in future editorial content looking at long COVID in Canada.