Living with Long Covid
Long Covid is diagnosed when symptoms persist for more than 12 weeks after the initial infection. These symptoms vary widely from person to person. Some experience ongoing fatigue, muscle pain, or breathlessness, while others report problems with memory, concentration, and everyday functioning.
For some, the effects are manageable alongside normal routines. For others, the changes are life-altering, forcing people to step back from careers, family roles, and activities they once loved.
This unpredictability can feel isolating, particularly given the lack of wider awareness and understanding. That is why peer support has become so important for people living with the condition.
Calderdale Long Covid Support Group
The Calderdale Long Covid Support Group was launched in 2022 with the backing of Calderdale’s Public Health Team. The group offers a safe and supportive space where people can connect, share experiences, and find reassurance that they are not facing this journey alone.
Meeting twice a month, the group hosts informal gatherings as well as more structured “listening and sharing” sessions, where lived experiences are openly valued and thoughts and feelings validated. Outside of these meetings, members stay connected daily via WhatsApp and Facebook.
One member described the impact of being part of the group:
“The support group has been a lifeline for me. Long Covid doesn’t just affect your body—it can feel like you’re grieving the life you had before the pandemic. Being able to talk with others who truly understand helps you feel less alone, and gives you hope that things can get better.”
The group now has around 70 members and is consistently looking to welcome and support more members of the community.
Finding a Way
In July, the group published a significant piece of research: Finding a way: What helps in long Covid recovery? The report was co-produced with group members and led by independent social researcher and fellow member, Juliette Hough.
Supported by Calderdale Public Health, the NHS West Yorkshire Integrated Care Board, and Calderdale Cares Partnership, the report was funded through the NHS Better Care Fund. The report explores recovery journeys, identifying what has helped people improve and what continues to hold them back.
Juliette explained her motivation:
“I was really struggling with Long Covid and couldn’t find clear, trustworthy evidence about how to recover. I wanted to hear directly from people who had made some improvement to learn what helped them, and to share that knowledge so others can see that recovery is possible. As a professional researcher, I was able to approach this carefully and systematically, so the findings could be meaningful and useful to others.”
The report highlighted that recovery is possible, but it requires the right mix of support, understanding, and services. Key findings included:
- 6,800 people in Calderdale are estimated to be living with Long Covid.
- Around 20% of those affected experience significant limitations in daily life.
- Stigmatisation is a key barrier to accessing support.
- Many people remain undiagnosed and unsupported due to low GP referral rates to Long Covid clinics.
The Calderdale Post-Covid Service, launched in 2021 in Sowerby Bridge, was described as “essential” to recovery for many. It offers validation, guidance on managing symptoms, and practical support, including advice for communicating with employers and applying for benefits.
Overall, the report sets out five recommendations:
- Strengthen and secure Long Covid services
- Increase awareness and referrals
- Address health inequalities
- Enhance mental health support
- Public health campaigns
To read the full report, please visit: https://www.jhresearch.org/s/Finding-a-way-report-final.pdf
Looking Ahead
Long Covid continues to present challenges, but the combination of local research and peer support is offering both hope and practical solutions. The report identifies areas for improvement, while the support group provides a vital network so that no one is left to navigate the challenges alone.
The Calderdale Long Covid Support Group meets on the third Friday of each month (1 – 3 pm) and also runs a listening and sharing group on the first Monday of each month (1 – 2.30 pm).
For more information or to join the group, email: lcsgroupcalderdale@gmail.com
Facebook: Long Covid Support Group Calderdale
