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DonateThe Power of Peer Support
11th Aug 2022 | Posted in : Nottinghamshire, Self Help Groups, Self Help UK News
"We share our friendship over coffee and cake, isolation begins to disappear."
Wendy and Gill share their story of setting up and running a self help group for people with Primary Biliary Cholangitis (PBC).
I had never even heard of this chronic illness nine years ago when I was diagnosed with PBC. Various Doctors and Consultants took five years to work out what was wrong with me. Yes, PBC can be very difficult to diagnose!!
PBC is an autoimmune condition which affects the liver. An autoimmune condition is one where the body is attacked by its own immune system. The two main symptoms are piruritus and chronic fatigue. There are many add ons depending on our own immune system. We are all unique with our own version of PBC. One of the worst challenges of having PBC can be the feeling of isolation. There are approximately only 20,000 people with PBC in the whole world. The majority of us therefore know no one with this chronic disease at the point of diagnoses. This type of isolation can affect one’s mental health.
Being in such a bad place, a very good friend said, “Wendy just because there is no self-help group in Nottingham doesn’t mean YOU can’t set one up”. As she advised I switched the television off and got my roll of wallpaper out and started to brainstorm my ideas. This included the practicalities of setting up the group and where to find help. Fast forward, Self-Help Nottingham and the PBC Foundation in Edinburgh supported me throughout. Self Help Nottingham sent out a press release in the local paper. The Foundation added my name to their list of volunteers for the Nottinghamshire area. The group was launched in May 2012 in the Self-Help Nottingham premises. At our monthly meetings we always share our emotions and experiences in a loving and caring way. In fact, we have an awful lot of laughter. There are no rules in what can and can’t be said. We share our friendship over coffee and cake, isolation begins to disappear. We have found PBC sisters and brothers (there are usually nine women to one man for this chronic illness with PBC).
Running the group on my own was beginning to affect my own wellbeing as I was so passionate about helping others. Mindful of this I asked Gill one of our members to volunteer with me. She told me that she felt honoured to be asked as being part of the group had really changed her life. We both agreed two heads were better than one. We soon started meeting twice a month. The second one being a social gathering, meals out, visiting each other’s homes and walking with picnics. One member of our group was delighted to be able to scratch without being judged! A newer member of the group recently said “After first night nerves I realised I had nothing to worry about as the group was very welcoming and most of all fun.
When Covid 19 struck we all began to feel isolated again as no face-to-face meetings took place. Then our phenomenal PBC Foundation raised their ball game even more in their support to us. Every PBC Foundation member was able to tune on Facebook Live in at 4.00 pm for an hour seven days a week to chat with Robert and Collette. The people with PBC were able to connect with others around the world if they wished to. As Gill loves to chat and text she soon had many international PBC friends. We then invited them to join our Nottingham WhatsApp Group and/or join our monthly Click Meetings run by the PBC Foundation.
Over the last two years locally our group has expanded by six people and internationally by a similar number with us reaching out privately. Quoting another member “I feel very blessed to have met these ladies in a virtual world and plan to meet up with the Nottingham Group when I travel to the UK for a vacation.
To sum up I firmly believe I have reached my goal to support others who now care about each other including me!! I feel ten feet tall and thank everyone for being supportive, caring and loving. This is what being in a Peer Group is all about.
If you would like to join us, we run monthly click meetings between 7.00 – 8.30 pm on the first Tuesday of the month, please contact Gill or Wendy for further details
Wendy Wheat and Gill Rich
Nottinghamshire PBC Group Volunteers