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. Bethan said that this would be valuable for her and her colleagues at the Long Covid Clinic too.
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 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 equally important, and their needs are urgent.
We need more research, better services, and deeper understanding - so that everyone with Long Covid has a chance to find their way forward.