Why research Long Covid recovery?
Finding a Way is research into how we can move towards recovery from Long Covid. The title was created by the Long Covid Support Group Calderdale. We wanted it to offer hope; to reflect that there is not just one, but many ‘ways’ to recover; to suggest that recovery is a journey; and to acknowledge that recovery isn’t easy. Not everyone has been able to find a way out.
The idea for this research began a couple of years ago, when I asked my Occupational Therapist, Bethan, what she had learned about recovery from the people she supported. I was very unwell at the time, and desperately wanted to know:
Is recovery from Long Covid possible?
And if so, how do people recover?
As a professional qualitative researcher, I wanted to talk to people in a structured way and see what I could learn from their experiences.
At that time - autumn 2023 - there was little research focused on what helps people recover. Most studies were exploring symptoms, causes, or the wide-ranging impacts on daily life. It was also hard to find trustworthy information. Many of us turned to unverified sources - Facebook groups, YouTubers, online forums. Some of this information was invaluable; some was unhelpful or even harmful. A few online groups left me feeling despair, as I read stories of anger, grief, and hopelessness.
With this project, my aim was to provide academically robust, accessible insights into what had helped a small number of people in my local area move towards recovery. This research doesn’t tell the whole story of Long Covid recovery - but it does tell some stories. It highlights common themes, draws connections, and, I hope, helps make sense of a complex and confusing experience.
The process of conducting the research helped me, too. Again and again, I found myself inspired by the people I interviewed. Some people motivated me to be braver in gently testing my limits - I started running again after hearing from those who’d returned to it. Others reminded me of the importance of small, slow increments - and I’d remember to pause, pace myself, and celebrate even the smallest of achievements.
And yet, it’s also vital to say: not everyone has recovered. Some members of my support group have experienced devastating losses, and still live with daily pain, incapacitating exhaustion, and stigma. Their stories are no less important - and their needs just as urgent.
We need more research, better services, and deeper understanding - so that everyone with Long Covid has a chance to find their way forward.