Janet Bunch has been part of our volunteer peer-support scheme, CaverBuddy, for many years. She tells us about why she became a CaverBuddy after her own diagnosis and what supporting others with cavernoma means to her.
I decided to become a Caverbuddy to give something back to the wonderful organisation that supported me through my diagnosis and because I would have wanted this experience when I was first diagnosed. Although I appreciate that might all sound a bit “self-righteous” or “twee”, a bit of a “why do you want to be “Miss World” question, it’s all true.
When I was first diagnosed in 2014, the hospital put me in touch with CAUK and suddenly I wasn’t alone. I attended a meeting in London, where there was a Consultant who gave a talk on Cavernomas and answered questions but more importantly, I met other members, my first ever interaction with people who had knowledge of my experience and felt the way that I felt.
When I was told that there was a way I could become a Caverbuddy, it made such perfect sense to me. I could be that person who understood and had empathy. I knew I wouldn’t have all the answers but I knew that it might make a small difference to just one person, to talk to someone who had a similar experience, and that was enough.
I enjoy being a Caverbuddy as I feel that I do actually make a difference. I love to talk to other people who are going through this, and whilst I may not have the answers or even be able to take away their worries, I do think that it helps to have someone to talk to, one to one, and be someone to sound off to, or laugh with, or cry with, or rant to, or someone that will listen, and all of those things are ok.
Since becoming a Caverbuddy I have become very aware of the different ways in which people deal with a long term diagnosis such as this. Some do want to talk, or want you to listen, and some want that to be a regular interaction, but some just want to know that you’re there, when they are ready, as people come to terms with their diagnosis at different times, over months, or years, but it’s all ok. If you know that someone is only a phone call or email away, it’s a bit like having a safety blanket in place and I’m happy to be anyone’s safety blanket.
To be a Caverbuddy I think that you need to have empathy, I think you need a sense of humour and you need to be able to bring that humour into your relationship. I think you need to be able to listen, not just hear, as often people will be telling you something without actually saying it. I think you just need to be human.
Personally I would recommend becoming a Caverbuddy to anyone. It’s incredibly rewarding to know that you are making a difference to someone. It also brings its own rewards to you, as you can talk freely about your own experience and if you find a like-minded soul, someone who understands the weird symptoms, the brain fog, the worry, the loss of your old self and the acceptance of your new normal, then it becomes a more personal experience. Some people are quiet, some people are loud, but we all share a common thread and it’s good to know that someone is there for you.
To learn more about our peer support scheme, visit the CaverBuddies page on our website or contact our CaverBuddies coordinator Tracey by emailing tracey@cavernoma.org.uk