Finding Purpose Through Volunteering: Carole’s Story as a Burning Nights Befriender

Ever felt completely alone, like no one gets what you go through each day?

At Burning Nights, we know how isolating life with CRPS can feel. That is why we provide a volunteer-led Virtual Befriending Service, offering you the chance to connect with someone else affected by CRPS who truly understands your experience. 

It's essential to us that our befrienders have lived experience with CRPS, allowing them to provide meaningful support to those affected by the condition, whether they are a patient, carer, family member or loved one.

We spoke with Carole*, one of our amazing volunteers, to find out more about her story and what inspired her to become a befriender with Burning Nights CRPS Support.

“I wanted to help others in a similar situation and also give purpose to my days. It feels really good to be able to make a difference.”

Carole’s journey with CRPS started in December 2020, when she was out walking her dog and fell, breaking her arm in three places. She was diagnosed with CRPS very soon afterwards and spent over 18 months on the pain clinic waiting list. 

For Carole, this was life changing. Prior to her diagnosis, she had a flourishing career as a health and fitness coach, specialising in yoga and mindfulness, but sadly, CRPS put an end to her work here.

Yet Carole is not described by her family and friends as motivational and positive for nothing. Despite what had befallen her, Carole still wanted to help others make a difference in their lives, and she decided to channel her abilities and talents to volunteer for Burning Nights.

“Nobody ‘gets’ CRPS unless they’ve got it.”

Carole first came across Burning Nights CRPS Support through a recommendation from her physiotherapist and was impressed by how helpful and practical the website was. 

“It was disheartening to see how much disinformation about CRPS there is out there on the internet,” Carole explains. “There are a lot of horror stories, and there are still some sites that wrongly say that CRPS is psychological. With Burning Nights, you get much more accurate, motivational, and practical advice about life after diagnosis.” 

Eventually, Carole decided she wanted to volunteer with Burning Nights herself.

At the time, due to debilitating symptoms from her CRPS, the only thing she could manage was talking on the phone. As Carole is good at listening and talking to others, she thought she would try her hand at being a virtual befriender.

 “What I found inspiring about befriending is how it’s all about supporting someone when you’re both in the same boat,” notes Carole. “Nobody ‘gets’ CRPS unless they’ve got it.”

“I love being able to help people, and it’s also a two-way thing.”

It’s been two years since Carole began her role as a befriending volunteer for Burning Nights and she is proud of having been able to make a connection with every single person she has befriended and helped.

In the process, Carole has found she loves being able to channel her coaching and motivational experience to help others as a befriender—and to rediscover purpose in her own life.

“I love being able to help people, and it’s also a two-way thing,” Carole explains. “Part of everyone’s recovery is to have a goal. I set myself a goal to help by volunteering.”

“You’re part of a community that knows exactly what you’ve gone through. There’s always something you can do.”

For Carole, volunteering with Burning Nights has been an empowering experience and has helped her to make valuable connections with others that would otherwise be hard to make.

“You’re part of a community that knows exactly what you’ve gone through. CRPS is such a rare condition, you won’t find a friend or neighbour or relative who has it. Volunteering at Burning Nights stops you from that isolation,” shares Carole. “And there’s always something you can do.” 

If you are interested in volunteering with Burning Nights and can spare a minimum of two hours a week, we would love to hear from you! Please visit our sign up page to register your interest and let us know which opportunity you think would suit you best– we are always on the lookout for befrienders like Carole but we also have  opportunities for other skills and talents.  During your time with us, you will have a contact who will be there for you if you have any issues or problems.

Alternately, if you would like to make a donation to support Burning Nights with our work, please click here. We are so grateful for the generosity of our community: just £12 could help us fund a befriending phone call or video chat. 

To stay informed about our work and receive updates on any news, appeals, events, and campaigns relating to CRPS, you can sign up for our free newsletter.

*Carole’s name has been anonymised at her request