One of the best things about being part of a global alopecia community is that we enjoy meeting people who also have alopecia and are learning to thrive with alopecia every day, every where in the world. For this installment, we’re visiting with Amy Johnson, the Communications/Fundraising Manager of Alopecia UK, a charity organization based in the UK whose vision is to improve the lives of those affected by alopecia.
Q. When were you diagnosed with alopecia areata?
I first had two small patches of Alopecia Areata in October 2007. They quickly grew back. By 2010, I had lost everything. I have experienced different degrees of patchy regrowth since 2012.
Q. How has alopecia changed you as an individual?
I’d like to think that alopecia hasn’t changed me too much. I take the approach that alopecia is something in my life, but isn’t something that should change the person I am. Saying that, it has had a BIG impact on me in that I have ended up working for an alopecia charity so I suppose you could argue it has become my life! After volunteering for Alopecia UK for a couple of years, I wanted to do more. As a person, I think the only real change that alopecia has made to me is that I am more accepting of people and probably a more empathetic individual.
Q. You were a volunteer with Alopecia UK at first?
Yes, Alopecia UK is a small charity that started in 2004 and for the first 10 years was run entirely by volunteers. I started volunteering in 2012. It’s only been in the last couple of years that it’s been in a position to employ a couple of staff (myself and my colleague, Jen). We still have a long way to go in the UK but we think it’s a step in the right direction.
Q. What was your first role volunteering with Alopecia UK and how long have you been an administrator for their Facebook page?
That’s the first thing they got me started on. I have been an administrator for the public Alopecia UK Facebook page since November 2012. I like to think I’ve used the page to increase awareness of alopecia in the UK. We’ve certainly increased our following and reach in that time. Social media was the first thing for me to get involved in. I then started to help with support emails and other charity communications.
I’ve only been an administrator on the Alopecia UK Facebook support group for the past year and it’s becoming increasingly active as a fantastic source of peer support, similar to the ‘Alopecia Areata‘ group – but smaller scale!
Q. What advice would you give to someone who is newly diagnosed with alopecia?
For the first year of me having alopecia, I genuinely felt like I was the only woman in her 20s who had gone bald. I had no idea that alopecia was as common as it is. I felt isolated, alone and a freak. Support from family and friends was great but I didn’t feel that they ‘got it’. For me, a breakthrough moment with my alopecia and instantly feeling better about it was meeting others with alopecia for the first time. Instant comfort and relief from knowing I wasn’t alone with my struggles and that others ‘got it’. It was just such a shame that it took me more than a year (nearly 18 months) to meet others. After meeting others I was motivated to start a local support group in Leeds (West Yorkshire) and volunteer for Alopecia UK, which has since lead to my role working for the charity. I wanted people to find support more quickly than I did.
My advice to anyone newly diagnosed would be to look into support, whether it be online or face to face. It can be such a relief to talk to others and share experiences. Whilst this isn’t a fix for the lost hair, it can really help us to come to terms with our loss. My other key piece of advice to anyone early on in their journey with alopecia is not to feel bad for feeling bad. The feelings we experience (anger, despair, grief, sadness etc) are all valid. It’s about finding the help to move beyond these feelings. That’s where peer support can prove so valuable.
Q. As an online support group leader, what do you feel is a challenge of an online support group?
I think the only thing I’ve found to be unhelpful is when someone is struggling and posts what I would consider a more ‘desperate’ post and some less than helpful people say “Cheer up, it’s just your hair” or words to this effect. I don’t believe this is what someone who is struggling needs to hear at that point. It can just add to feelings of guilt etc. What makes the groups great is the mix of people — those who are happy to be bald, those who are bald but not too happy about it but have accepted it, wig wearers and happy, wig wearers and struggling, and newly diagnosed and struggling. It’s a big mix and it can be hard to manage but also what makes it work. It’s about allowing individuals to express their feelings and get the support they’re looking for.
Amy Johnson is Communications and Fundraising Manager at Alopecia UK, which is a registered charity with aims around support, awareness and research of alopecia. To find a local support group in the UK area or learn how to help their community grow, visit www.alopeciaonline.org.uk.