For most of us, loading and unloading the dishwasher is a routine task we don’t give a second thought. For many people living with long COVID, this chore could use up all their available energy in a day.
“When I was at my worst with long COVID, I could only put one item at a time in the dishwasher and then I’d have to rest,” recalls Michelle Roy. “When my grocery delivery arrived, I’d take one can out of the bin, walk a few steps to the cupboard and then have to rest.”
Before her COVID-19 infection, Michelle was an active person who enjoyed outdoor sports. She hiked, skied, mountain biked and even did some mountaineering. She previously held fast-paced management roles in the tech sector. She saw herself as someone who could just push through anything.
Before contracting COVID-19, Michelle held a fast-paced job, hiked, skied, mountain biked and even did some mountaineering.
She contracted COVID-19 in December 2021, after an unplanned surgery and hospital stay. After her initial COVID infection, she didn’t bounce back. Struggling with a number of seemingly disconnected symptoms, she visited various doctors, but no one seemed to know how to help her. At one point, she was advised to increase her level of exercise, something that ended up being the worst thing she could have done. She had a significant crash that led to her being bedridden for months.
By June 2022, she was accepted into the Post-COVID Recovery Clinic. It was there she finally got the assistance she needed to start getting her life back on track.
“The clinic staff were able to help me get my head around what was going on with my body,” says Michelle. “I finally started to understand things like pacing and how it involved managing physical, cognitive and emotional energy.”
Working with the clinic staff helped her understand how to tailor her physical activity to her current symptoms. She learned to accept modifications of daily tasks, like using a shower stool or sitting down to brush her teeth. The clinic team also helped her understand the science behind meditation and breathwork practices, and how they could help with the nervous system dysregulation she was experiencing.
In 2023, when the opportunity came up to be a patient partner on the MyGuide Long COVID project, Michelle saw it as a way to give back.
MyGuide is an online tool created by the Post-COVID-19 Interdisciplinary Clinical Care Network (
PC-ICCN) to help people living with long COVID find best-practice information to self-manage their symptoms.
A screen shot from the MyGuide Long COVID homepage. Content is available in English, Chinese, Punjabi, Tagalog and French.
“I could have used something like MyGuide when I was first experiencing symptoms. I was piecing together information from so many different sources, and it was hard to know what was reliable,” says Michelle. “MyGuide brings information together in one place. It’s a great resource to help people before they are seen at the clinic. And for people who don’t have access to a clinic, it can give them information to start a conversation with their health care provider.”
More recently, Michelle has been part of a team of patient partners and health care providers from across Canada who have been helping PC-ICCN incorporate new national guidelines for long COVID into MyGuide.
That updated version will be launching in a few weeks and will include provincial and territorial resources to help people across the country.
“Having patient partners on the team was hugely valuable. They helped us understand the biggest challenges and biggest concerns of people living with long COVID,” says Claire Wilson, PC-ICCN director. “The language we’ve used and how we’ve formatted the content in MyGuide is all thanks to their input.”
While Michelle has come a long way since 2022, she is still on her recovery journey. She feels like her quality of life has improved and she’s able to manage more daily activities and she’s hopeful to improve further.
“If I hadn’t gone through it myself, I never would have believed how debilitating fatigue can be with long COVID. It’s changed everything about my life and how I interact with the world.”
