Finding hope for the future of Long COVID care: Gill’s story

“I watched myself – my ability to be the energetic, dynamic, social, active, athletic person that I am in the world – erode over each passing week,” says Gill. “I felt really isolated and increasingly fearful that I would never get back to the life that I had enjoyed.”

For many months, she didn’t even have a name for what she was experiencing. Specialist after specialist and test after test were unable to confirm a diagnosis. Finally, almost through a process of elimination, her health team concluded the only possible answer was that she had Long COVID. Armed with this information, she began her journey to carve out a path toward recovery.

Feeling abandoned, searching for answers

Even with her diagnosis, Gill struggled to find a straightforward treatment path. Long COVID is a condition that causes persistent and often debilitating symptoms after a COVID infection. There are over 100 reported symptoms such as fatigue, shortness of breath, heart palpitations, and cognitive challenges like memory loss or brain fog. The symptoms show up differently from person to person and can continue for weeks, months, or even years. And since the condition is relatively new, the medical field is still trying to understand how to define, diagnose and treat it.  

Gill researched constantly, looking for any information about what might be working for other Long Haulers – a nickname that was developed for the community of those coping with the condition. Sometimes she’d see small improvements in her energy, quickly followed by a crash that could last days. The fear that she’d never regain her health deepened. 

Gill wrote an essay for the CBC about her ongoing experience, expressing her desire to hear more stories about hope. She wanted to hear from others who had recovered their health. She needed to believe that recovery was possible. And that’s how she met Dr. Kieran Quinn. 

Leading efforts to advance Long COVID care

Dr. Quinn is a General Internist and Palliative Care Clinician-Scientist at Sinai Health. Clinician-scientists have a unique role within the medical system. They provide care directly to patients experiencing health challenges. But then they take observations about these patients’ experiences back to a medical lab to test and find solutions through careful, methodical research. Their findings then inform treatments for others experiencing similar health challenges in the future. Dr. Quinn’s research focuses on improving end-of-life care for patients with terminal non-cancer illnesses as well as improving the recognition and care of people with Long COVID.

In partnership with Dr. Angela Cheung, a Clinician-Scientist at UHN, Dr. Quinn is leading one of the world’s first clinical trials that aims to discover new treatments for Long COVID. With multiple sites across Canada, the trial is testing different drugs to find effective treatments for Long COVID.

Image

Dr. Quinn read Gill’s essay while they were recruiting participants for the trial. He reached out to her, inviting her to join the study. She said yes immediately. But the results were not what she expected.

Unfortunately, Gill didn’t experience a meaningful improvement in her symptoms. But she did find a medical team who understood what she was going through, and who were willing to support her as she continued to search for a treatment that would help her get well.    

“It was like I had found the island in the sea of confusion…” says Gill. “[Dr. Quinn] didn’t have a cure for me. He didn’t have a magic pill I could take that would make it all go away. But he had empathy, understanding, and a frame of reference [for what I was going through].”  

A return to health and a commitment to spread hope

After continued searching, Gill did find a program not offered through public health institutions that helped her make a full recovery. It applies the principles of cognitive behavioural therapy and neuroplasticity—the brain's ability to change and adapt through new experiences. There is a growing body of research studying these approaches, and Gill feels very lucky that they worked so well for her. But she knows there is so much more research needed for the great many who continue to suffer with long COVID and are looking for answers.  

This is why she believes so strongly in the work that Dr. Quinn is doing to study effective treatments. It’s also why she is committed to raising support and awareness for individuals navigating their own journeys with Long COVID.  

“We have to find the right ways to help everybody get their hope back and get them back on the path of living.” 

- Gill Deacon

In partnership with Sinai Health Foundation, Gill is conducting a series of interviews with other Long Haulers who are on a path towards reclaiming their health. Through these conversations, she wants to shed light on the challenges people experience while they navigate the ups and downs of life with Long COVID. But most of all, she wants to be that voice of hope she desperately needed when she was unwell. You can watch those conversations here.

“I think it is really dangerous to let the assumption that Long COVID is a permanent, life-altering condition to be out there in the world,” says Gill. “We have to research it, we have to understand more about it, and we have to find the right ways to help everybody get their hope back and get them back on the path of living. We have to figure that out and develop the medical knowledge and expertise to support them.”  

How you can help us invest in hope  

Support is needed to keep research efforts going. Clinical trials can cost between $10 million and $100 million, and research funding is highly competitive and hard to come by. That’s why Sinai Health Foundation raises funds to support clinical research. Building the medical knowledge needed to help people like Gill recover starts with the work clinician-scientists like Dr. Quinn are doing every day.  

Researchers need to be able to invest in equipment and staff to study complex conditions like Long COVID. By supporting their work, you’re investing in medical breakthroughs that will help people access the treatments they need and regain their hope. Will you donate today?