Alopecia UK London Awareness

Alopecia UK logoI went to the Alopecia UK London Awareness Event recently, and gave a little speech over lunch introducing myself as ambassador for a small charity doing wonderful work.

I was also there with books and a display about what I can offer as an author with alopecia visiting a school where a pupil has alopecia too. That’s a small but important word: too. Being among 200 other alopecians was a new experience and I loved it.

There’s something great about people who’ve lost their hair, young or old, male or female, whether or not they’ll vote Green like me or share my passion for George Eliot or peanut butter. I love getting to know their stories, all of them different. Every conversation I had was an education.

Portrait of Sue by Maria Emilov
Portrait of Sue by Maria Emilov

Some have great support; others are bullied. One can’t wear a bandanna to hide her bald patches at work because it’s “unprofessional” (HELLO?). One striking black woman had been misread for years as a tough cookie who shaves her head. Some of those I met wore wigs, others had scarves and some scalps were au naturel. Some have no hair; others have areata, including one woman who told me she’d much rather be bald. On arrival some members opted to wear a badge that said NOT TO BE PHOTOGRAPHED because, like me not so long ago, they’re hiding their alopecia. Of course some have had plenty of time to adjust to hair loss and some are still in shock. But I think everyone there smiled A LOT. Imagine being the only one in your workplace or school with alopecia – and then being surrounded by others who understand.

So, why are alopecians fabulous – whether they feel strong or very vulnerable indeed, or both? Whether they are open about it or keeping the secret? Whether they’ll opt for painful steroid injections or wouldn’t take the cure if there really was one? Because they have empathy. They don’t judge others because they don’t want to be judged, by their appearance or anything else. They know we have the right to be accepted as we are and they honour that right in everyone. They have compassion and respect for others, including the chemo patients with whom they’re sometimes confused. They want to help others. And they do, whether it’s by jumping out of aeroplanes to raise money for AUK or by befriending a child with an incurable illness…

Some of those attending the event were parents on behalf of children with alopecia. I had a long chat with a Greek doctor about his daughter, my own experience and the novel about alopecia which helped me, but which has gone on to make a difference to readers who can identify with my character. Then he asked me a question that was both a GULP! and a KER-CHING! And those wonderful young alopecians I’ve got to know, like Chloe and Charlotte and Molly, who just want to support others, are his answer. I’ll never forget it.

“Have you ever thought,” he asked, “that your alopecia might not be a problem but a gift?”

2 thoughts on “Alopecia UK London Awareness”

  1. I loved this blog, and I can relate to it; not in terms of alopecia, but in terms of negative things I have suffered through. Losing a lifelong best friend at a young age, depression, massive confidence issues, hating my appearance, insomnia; all of these are things that were shit, awful, and very tough to come to terms with, deal with, and battle through – some battles are still very much ongoing. But they all had a positive side, as weird as that sounds. They taught me to be empathetic of people who have been through similar struggles. A year after my friend died in 2012, a friend of mine very sadly lost one of her closest friends; if I hadn’t been through the same experience a year beforehand, I wouldn’t have been able to relate, empathise, or help her anywhere near as much as I managed to.

    There are plenty of people who go through crap and it makes them bitter, angry, cold humans. I’d be lying if I didn’t admit there was a side of me that is far more cynical than I ever used to be when I was in my teenage years. But I’m also far more understanding, and have a much stronger desire to help people who have gone through similar experiences, because I have had to go through bad times myself.

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