Last August, Sébastien Verret launched a cry from the heart. “I wanted to have a solution, I wanted to have treatment, I didn’t want to live the life I had anymore.”
In the following weeks, he received dozens of testimonies from citizens who were also suffering from long COVID. “There was a lot of distress,” emphasizes the father.
Physical and psychological distress that he must face, day after day. “It’s like an advent calendar, every day I open my little door and I discover the little gift, the symptom of the day.”
In the last year, Mr. Verret’s condition has stabilized slightly. A few changes in his medication have alleviated some of his symptoms. Others would unfortunately be incurable.
According to him, one of the first symptoms experienced by a person with long COVID is “immense fatigue”. Washing dishes or cooking causes a significant loss of energy. Same thing for a simple walk. “We feel guilty, we feel cowardly.”
A feeling he wasn’t the only one to feel.
Mutual aid association
Sébastien Verret then made the decision to build a community. A support community for people with long COVID and their loved ones.
Last September, the Quebec Long COVID Association was created. A few months later, the association already had more than 2,500 members.
Every week, thousands of subscribers can read or publish testimonies, scientific studies and messages of hope or demands.
Although the majority of them come from Quebec, nearly 20% of the association’s members are located in Europe.
About 15% of adults who contracted COVID-19 had, or are still experiencing, long-term symptoms, three months or more after their initial COVID-19 infection, according to Statistics Canada data.
Offer the “missing” services
Although the essence of the association is not advocacy or activism, the organization wishes to raise awareness of the glaring lack of services.
“By having one voice to speak, we are heard more than three or four people speaking.”
— Sébastien Verret, suffering from long COVID
Open to anyone wishing to learn more about long COVID, the organization offers many services to its members. Home help, legal assistance, listening and psychosocial support services are available at low cost or free of charge.
To benefit from it, the interested person must subscribe to the association at a cost of $10. The subscription is valid for life.
“Currently, we have no help”
According to Mr. Verret, these services should already be available in the public system. He hopes to see progress in the care offered to those suffering from his illness.
“There are long COVID clinics throughout Quebec, but there is no one that is the same, that offers the same services.”
— Sébastien Verret, father
Born in Quebec, he must travel to Montreal and Sherbrooke to receive care. “Having follow-up with long COVID is very difficult, because there are so few doctors who are interested in it.”
According to him, every doctor, specialist, health professional should undergo training on the long-term effects of COVID-19. “The symptoms are there, they are very real.”
Help for loved ones
Father of two children, Sébastien Verret tells his story, but also that of his family. “It was difficult for them, they had to learn to live with a half-hearted father.”
For this reason, he wanted his association to offer services specifically for the loved ones of those affected. In a few weeks, a telephone crisis line will be available for caregivers.
“It’s not just the person who is sick who is affected by long COVID, it’s also those around them.”
