Alopecia Support Groups

Thanks to Lizzie for writing this amazing article on alopecia support groups. If you’re interested in possibly joining a support group, keep scrolling to find some information on what an alopecia support group is and they could help you or your child cope with hair loss.

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To join or not to join?

First of all, my disclaimer – I’m not a member of a support group so I can’t describe one from my own experience. But that doesn’t mean I don’t think they’re a good idea! So what I wanted to do in this article is to talk about why I’m not a member of one at the moment, and what I wish had been available when I was younger.

Let’s get the reasons, I’m not a member out of the way first.
They boil down to:

• I live a very very long way away from any support groups – the closest one is about a 2 ½ hour drive away!
• I’m generally only at home at the weekends, and my working week can take me to all sorts of places, so I don’t have a set routine which would allow me to join a group and attend regularly
• Due to the above, my social time is very limited and I already have more things I’d like to do with it than I have time to do those things in
• I actually don’t feel the need to join a group – alopecia is no longer a big deal in my life so I don’t feel I need support in the way I might have when I was younger

I never used to talk about wigs and alopecia, other than discussing any potential changes of wig style and colour with my husband. It’s simply become part of me and my life, not something that I feel marks me out or needs to be something colleagues and new friends have to be told about. However, joining the lovely Simply Wigs team of bloggers has been a bit of a revelation for me! It’s helped me to be more open, without feeling compelled to talk about wigs and alopecia if I’m not in the mood. I still don’t feel that alopecia defines me in any way, but I do now feel that it’s a more normal thing to talk about, and I love experimenting with different wig styles and sharing my thoughts with you lovely people. It’s a very privileged position to be in.

Things weren’t always like that. When I first lost my hair, aged 6, wigs weren’t very natural looking so it was hard to disguise the fact I was ‘different’. That was hard for my Mum, who felt as though she had the only child with alopecia in the country! She and I wrote about those early years in an earlier blog. I think that it would have been helpful for her to talk to other parents with kids experiencing hair loss, so that they could have shared practical tips and experiences of NHS support, as well as supporting each other in the emotional sense. I also think that if I’d lost my hair as a teenager or young adult, I’d have had a much harder time and would have found a support group a great help.

For me, that’s what the benefit of support groups comes down to –
support in many senses.

• An opportunity to meet new people, who share a key experience with you
• Emotional support from those new friends, who understand how you’re feeling
• Sharing practical tips on wig styles and wig care
• Sharing experience of medical treatments, and accessing NHS support
• A safe space to go without a wig, if that’s something you want to do

Are you a member of a support group?
How has it helped you?
I’d love to hear your views and stories,
so please leave your comments below.

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What Is an Alopecia Support Group?

A support group is where a group of individuals who are all affected by a common difficulty come together to share their experiences, talk to one another and, in general, feel less alone about whatever it is they are facing. For alopecia, support groups might help someone come to terms with a diagnosis, get a taste for what their options are going forward and get the inside scoop on things like what wig shops to avoid and how to tie a headscarf.

Many alopecia support groups are not lead by professionals, but by someone with alopecia or someone who just wishes to help people find their voice.

The aim of a support group is not to replace counselling or therapy (although some forms of talk therapy do include group sessions). If you are struggling with your mental health, it is best to consult with a doctor.

How Do Support Groups for Alopecia Help?

Some of the ways that an alopecia support group might be useful to you include:

• Helping you to find your voice
• Empowering you when you might feel quite vulnerable
• Feeling less alone when you’re surrounded by others with alopecia
• Learning key hair loss coping skills
• Creating a community that you can turn to when times are difficult or you’re struggling

Some people also find that an alopecia support group is a great place to experiment with not wearing headwear or a wig, and this can help them feel more confident with their hair loss.

Support Groups for Kids

One comment that we often receive is from those who wish they’d had better support available to them when they were younger.

Children can be cruel to those who look different to what they might expect, and kids with alopecia might find they struggle with confidence at school or around their peers. Alopecia support groups for children give them a safe space to talk about their feelings and allow them to be surrounded by other children in a similar position. They are often able to play together and make new friends who can understand or empathise with their journey. 

It’s also a great opportunity for parents and caregivers to meet one another and find support.

Getting Started

Very often, the hardest part is making the leap. If you would like to join an alopecia support group or learn more, Alopecia UK has some great resources on finding a support group near you.

If you’re still not sure whether an alopecia support group is for you, you might like to try writing your story out. Our community, We, That Wear Wigs, is a place where many people with various different forms of hair loss, including alopecia, share their stories and experiences, and lift each other up.