Author and Alopecia UK ambassador writes about her time at this year's Big Weekend in Birmingham....
"Heading off to Birmingham for the Alopecia UK Big Weekend 2017, I found myself chatting with a guard who offered to help with my case, which was full of books. Over four stops to Milton Keynes I shared my alopecia story – often told but new and surprising to each listener. Her eyes filled, as people’s often do, not at my horror, tears and reduced self-esteem but when I reached the happy ending: my opportunity to help and encourage others. She told me she was picked on at school by the cruel minority because she had bad skin, and that life can be hard but when she puts on a face for the world, it helps. She shared the loss of her parents and an aunt in a care home. There was, underneath an image that’s strong and spiky – a little bit Mo in EastEnders if I remember rightly – a sadness and softness in her, and I think she enjoyed our conversation as much as I did. It was a good beginning to my day.
When I became an Ambassador for the charity in 2013 I didn’t really know many people in the alopecia community outside the support group I lead in Berkhamsted. Now, thanks to the BBC Eggheads quiz in which I captained a team of ladies with alopecia and other media appearances, and the permanent status of The Waterhouse Girl as my bestselling novel, it’s a genuine reunion. Belonging is a good feeling and these are good people, empathetic and supportive. The ‘old hands’ include big, bright characters ready to laugh. For first-timers it’s a nurturing, liberating and sometimes boisterous environment to enter. At my first Big Weekend, I felt an outsider in spite of my role, but not for long. Everyone is warmly welcomed and new friendships soon begin. Some wear wigs, others scarves or bandanas or beanies, and some like me bare their scalps – because this is what they regularly do, or because this is the one time they feel they can. For those who feel afraid or insecure out there in the hairy world, the release can be powerful and elating. There’s a spirit of solidarity, goodwill and fun.
Maybe some come for the talks, the information, the chance to have eyebrows tattooed or to try on wigs. I go with books to sell because four of my thirty titles feature alopecia, but I’m there for the relationships and conversations. Twice I’ve made a speech but this time I was running a children’s workshop. Only the Mindfulness really interested me as a Quaker but I planned to spend most of my day at my table alongside the wig arrays, tattoo artists and eyelash demonstrations, scarves and hats for sale. The day was full of lovely encounters: some with new faces, some actual variations on online connections and some reunions. I met:
- a girl called Ella who said, “You came to my primary school,” which puzzled me because I didn’t remember her. It turned out that my visit was during the six months the family spent out of the country. Ah! But the punchline? Ella lost her hair while away and when she returned fearfully to school everyone said, “Oh, alopecia – like Sue Hampton. She came here.” No problem of any sort with anyone. Education is everything. They knew and they understood.
- a woman who told me she was really struggling with her alopecia when ‘our’ episode of Eggheads aired. She cried, cheered and felt lifted. It was a turning point and encouraged her to go to Alton Towers with the charity. Now she’s in a “better place”.
- two fellow-Ambassadors I hadn’t met before: Tom Spencer (Tomohawk), vlogger and YouTube star, and Heather Fisher, Olympian and England rugby player. Our conversations were deep and frank, there were hugs involved and I liked them both enormously.
- some children who made my workshop (creating globalobs, each one with a difference) a joy
- and so many more, including Marie, Victoria and Jeanette from the winning Eggheads team. It was a day of smiles.
This three day event – I only attended on the Saturday – is a huge organisational feat and I applaud Jen Chambers and Amy Johnson: terrific staff beloved by everyone. The charity is soon to merge with AAR-UK which focuses on research; everyone is positive about the future.
Four women, all of whom cried, spoke about how alopecia eventually changed their lives for the better – emotional stories which clearly inspired many. It’s not possible, of course, to hit the right note for each individual in the audience, and there will have been some listeners who don’t see the condition as a gift. Someone told me that day how she ******** hates it. But built in to everything is the recognition of diversity. We have alopecia in common but each experience, like each personality and life, is nonetheless different.
I’m not just proud to be a part of Alopecia UK. I’m very, very happy."