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Amy visits the Cardiff support group

13th November 2015

On Wednesday I made the journey from my home in West Yorkshire to Cardiff to attend the alopecia support group run by Gwennan Thomas (thanks Gwen for giving me your sofa bed for the night!)

I’ve been trying to make my way around some of the support groups across the UK, to find out how they’re getting on, introduce the charity, offer my own experiences of running a support group in Leeds and have an opportunity to chat to lots of people with alopecia. 

All of the support groups I have attended over the past 12 months (Manchester/London/Birmingham/Leicester, as well as my own in Leeds) have been relaxed and friendly meetings and the Cardiff group was no exception. 

The meeting was held in a local pub/restaurant where Gwen had reserved a table for us. Gwen tells me that meetings are held in a mixture of locations, some more private than others, some meetings include an activity such as a walk.

The meeting on Wednesday was great. As well as regular members in attendance (all with experience of alopecia areata), three new ladies came along, each with a different type of alopecia - frontal fibrosing alopecia, lichen planopilaris (another type of scarring alopecia) and androgenetic alopecia.

Different types of alopecia can bring different degrees of hair loss, different appearances and different symptoms. However, the psychological challenges of having a condition that leaves us with a visible difference remain the same. It was so interesting that Wednesday’s meeting had such a mix of experiences around the table. There were people who wear wigs, people who go ‘au naturale’ with their hair loss, a lady wearing a bandana, a lady with a custom made ‘topper’ to cover a bald patch and a lady using fibres to disguise the thinning on her scalp as a result of androgenetic alopecia. 

A real mix of ways of managing our alopecia but conversations had very similar themes - how at some point (whether past or present) we had experienced struggles with confidence, self-esteem, feelings of isolation, challenges with disguising hair loss and reactions from others. 

Those wearing wigs in the group were interested to learn how those who don’t wear wigs get on, perhaps anticipating experiences of comments and stares and maybe surprised to learn that negative encounters are an extremely rare occurrence. Those in the group not wearing wigs listened to the experiences of those who do, perhaps surprised to hear comments about them being comfortable, affordable and easy to style. 

But conversation wasn’t just limited to talk of hair loss. We found out about jobs and family life. Photos were shared from smart phones and the evening included lots of smiles and laughter, I think a surprise to the newcomers to the group. Perhaps there is an idea that support groups are always solemn occasions. 

After much chatter the meeting naturally came to an end. People left to catch buses or get lifts from partners. Departing comments from the new attendees were similar “I’m so glad I came along”, “It’s so good to know i’m not alone” “So interesting to hear of the experiences of others”. Regular attendees were glad to have met new members and hope they will return in the future. 

It can be a huge step to go along to a support group meeting. Face to face contact with people you’ve not met before can seem like a really scary idea. My advice is to get along to a meeting. If it doesn’t work out for you, at least you’ll then know and won't be left wondering. We do know, for many, meeting others with alopecia can be a real game-changer. That instant recognition that you’re not alone can make all the difference. 

Amy is Alopecia UK's Communications Manager and runs the Leeds alopecia support group 

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