Often, the major issue for people who develop alopecia is knowing how to deal with it.
After diagnosis, it can seem like there is not a lot of support available. Doctors cannot do much to help, and sufferers may not know many or any other people with the same condition, so they feel like they have to get on with it alone and muddle along as best they can.
Over time however, I have realised that there IS a lot of help and support out there but that you have to know where to look!
When I was first diagnosed, I was only aware of one other person with alopecia. This was a friend of my mum’s, but as she was older than me and didn’t live nearby, it wasn’t easy to discuss it with her. She chooses not to wear a wig, which is a fantastic and brave decision and one which I found inspiring, but as an 18-year-old girl trying to look as ‘normal’ as possible, I wasn’t ready to take the same approach at that stage.
Support came from friends and family in many different forms. My parents are both doctors so they were very practical and matter-of-fact about it, but in some ways I found it frustrating because I wanted them to find me a solution and there was none!
My friends reacted in a variety of ways: some got upset and emotional when I told them, some ignored talking about it completely and others were more light-hearted and able to see the funny side of it.
There is no ‘right’ way for people to react to alopecia, and in fact the people who have been most supportive have been those who have managed to do all of the above! Because sometimes I want to talk about it, sometimes I don’t, sometimes I want to laugh about it and sometimes I want to cry! So all you can do is hope that people will be there for you when you need them.
There have been a number of companies and professionals who I have found very helpful in suggesting solutions and pointing me in the right direction.
Hairdressers at Clancy’s in Elgin and A&A Studios in Edinburgh were amazing at making me feel comfortable early on and offering me advice on the right wigs to choose. Fiona Ramsay at Enhance Permanent Cosmetics did an incredible job on my semi permanent eyebrow tattoos, and on repairing the rather dodgy tattoo jobs I had had previously!
Last but by no means least is Jayne Waddell, who is a supplier of Freedom wigs and a semi permanent makeup artist at Lasting Impression by Jayne, based in Glasgow, as well as the founder of AAR-UK, the charity I am fundraising for. I met Jayne only a year ago, because I was looking for a new wig and had asked her to do a fitting. Jayne also developed alopecia in her late teens and now wears a wig, but you would never know because she looks incredible!
Talking to Jayne was the first time I had ever really spoken about my alopecia to another sufferer in detail and this was an extremely cathartic experience! We had so much in common and I got quite emotional when I realised how similar our experiences had been. I was truly inspired by Jayne and after meeting her I started to think that I wanted to do more to tackle my own insecurities and raise awareness of the condition.
Since meeting Jayne, I have started talking to other alopecia sufferers about their experiences. Sharing stories with other people has been incredibly helpful – we can empathise with each other because we have gone through many of the same challenges.
One of the reasons I set up this blog was because I wanted it to be a forum for alopecia sufferers, so they could hear other people’s stories and share their own. I am encouraging friends with alopecia to write guest articles, and I would welcome anyone that’s interested to get in touch.
I would also love to set up some kind of mentoring system, so that people who have been recently diagnosed can get in touch with people who have had alopecia for a while, and who can offer support and advice.
It is a difficult condition to come to terms with, but one of the key things to remember is that you are not alone.