I’m Jen, 30 years old, from Edinburgh, Scotland. I have Alopecia Universalis which basically means I have total hair loss all over including my eyebrows & eyelashes. It has taken me a while to write this blog as it brought up so many emotions. Here is my story...

My journey with alopecia started when I was around 2 years old when a small patch of hair fell out. It continued to fall out for several years until eventually I had none left. I went through a pattern of losing my hair then it would grow back in over the year but then fall out again. I went through every emotion possible from deep frustration to endless tears, followed by glimmers of hope and possibilities of new treatments to try, but eventually I ­­­­­­accepted that this was who I am and embraced every situation that came my way. 

It was extremely difficult growing through those years as my mum would take me to nursery and she could hear the other mums & grans talking about me and even asked her how my cancer treatment was going. As I looked different, I was treated differently from the other children although at this point, I wasn’t aware of it, my mum certainly was. She protected me from as many situations as possible. As I started in primary 1, I was so proud of my new uniform and just wanted to be friends with everyone, but I soon realised that because of my hair, others didn’t want to be friends and, I ended up being severely bullied all the way through my school years.

Growing up with alopecia was tough, the lack of support and understanding, the lack of people in similar situations, the constant nasty comments and bullying. The wigs back then were not as natural, and we also struggled to find people living with alopecia. I remember going to one of the yearly meetups hosted by a support group that pre-dated Alopecia UK. We were placed down in the basement of this venue, so we weren’t seen and “had privacy” but this just made me feel more separated from the world than ever. The updates back then, due to no social media, were sent every 6 months by post and it was literally a 3-page bulletin with the same information in it. The odd meetup my mum and I did attend (I think we only attended 3 in total), we felt very separate and the youngest there by about 50 years. It focused more on the anxiety, upset, and awful situation we were in rather than finding solutions and having some light-hearted fun. These meetings made me feel more excluded and different than ever.

As for the wigs back then, they didn’t make children’s or petite wigs just one average size. I got given this very large synthetic wig that was way too thick, shiny and heavy for my tiny head. We weren’t even allowed to wash the wig as synthetic shampoo wasn’t a thing, we were given a refresher spray that we sprayed on the hair once a week. These salon appointments were stressful and upsetting, you’d only have the choice of one or two salons. People from up north, Aberdeen etc had to travel to Edinburgh to get their wigs. Thankfully this has changed with more variety of salons and a real choice of where you can visit. This has helped me massively and I’ve now become great friends with my salon & look forward to going.  Growing up & visiting these salons would fill me with dread, I cried going in and had to have my mum at every single appointment. We would usually get put in a back room of an old salon and have the choice of one or two options that weren’t even suitable. The staff would constantly fight with each other, and it wasn’t welcoming. You were made to feel like a pain, because you needed a wig.

I won’t go into too much detail about my teenage years other than they were the toughest years I’ve ever gone through. During these years my hair fell out and made no signs of growing back. I lost all my lashes & eyebrows, everything. I wasn’t like my peers, I couldn’t shave my legs, I’d get bullied in the changing rooms after PE, they would try to pull my wig off. I left school at just 16 years old to get away from it all.

Fast forward to now and thanks to my family, determination and a change in society, I feel better than ever.  My hair hasn’t shown any signs of regrowth for over 15 years, but it doesn’t upset me anymore. I’ve had to put in a lot of work, tears, battled anxiety but now I own my alopecia – it doesn’t own me. I never let it stop me, no matter how scary it was, I travelled the world & worked for Disney on their cruise ships. Facing lots of personal challenges, sea survival tests where I had to dive down in deep water and then climb onto a life raft. I just found new ways of ‘getting around the issues’ and sourced different products to help the condition of my wigs. I still had the same wig, the trusty Trendco Diamond, one a year – it was my comfort blanket. But I sourced stronger tape from America to allow me to work on Cruise Ships and abroad. It’s weird though because even though I did all these amazing things in my 20s, I still felt a little like I had to hide my alopecia and hide behind my wig. I would even go as far as sleeping in it because I shared a cabin with another crew member, that literally meant wearing my wig constantly for a 4-month period.

Just before lockdown in January 2020, I noticed a huge shift in society, social media & the presence of Alopecia UK. I finally felt seen, like I existed. I took the plunge and set up an Instagram account and followed accounts that used the #alopeciauk & #alopeciawareness hashtags. This was probably the best decision I’ve ever made, and I urge anyone with alopecia to reach out and connect with us in this online community. Even if you don’t want to publicise your own alopecia, the private message option is a brilliant tool.

I grew from strength to strength and finally felt like I was more than just my lack of hair. We started with a super large group chat during the lockdown months, where collectively we created support and awareness videos to finally deciding I wanted to connect with people in my local area. I wanted to be that voice, that I hadn’t had growing up. I wanted to keep things fun but also share stories, hints & tips and places to visit that were super supportive with our hair loss. That’s when I hosted a meet-up in Edinburgh, after advertising on Instagram, and I was amazed at just how many people came forward to join. I think there was around 25 of us so I went from feeling alone to having a small army of us and it felt empowering. I was excited to choose a beautiful venue and even made up little goodie bags full of products. It was a great day and even now we still all meet for cinema trips & dinners. 

My strength and confidence continued to grow. September 2021 arrived and I was honoured to be an Alopecia UK Charity Champion, raising funds to help further the charity's aims and hopefully help at least one person going through this life-changing process. I challenged myself to visit tourist areas in Edinburgh without my wig and the highlight for me, was walking around Edinburgh Zoo without a wig or turban and wearing my bright blue Alopecia UK t-shirt. I felt proud and wanted people to ask me questions. What a change from the reclusive, shy 13-year-old to now.

My advice to anyone with alopecia is reach out to others who just “get it”. The online world has changed so much over the years and for me it has changed for the better. It has given me the freedom and confidence to feel I have the option to go wig free, after 25+ years of feeling like I would always be hiding behind my wig. It has given us the option to find amazing wigs and enjoy wearing them. They are so natural, it is unbelievable. I’ve had the chance to work with many companies to share my experience and found so many products I never even knew existed, my number one being my Bella Turbans. My family have also noticed a huge change in my shift in energy. My anxiety has reduced, and now embrace my hair loss and love that it's a part of me. I now see it as something that makes me super unique.

I’ve had the pleasure of getting to know Amy from Alopecia UK over the last few months, and wow what an inspiration she is. Some days I really do wonder, if the Alopecia UK charity had been around when I was growing up, would things have been different? That, of course, is a question I will never get an answer to, but I hope that because the charity now exists things are easier for children and teens growing up with alopecia than they were for me. I don't want anyone else to have the same experience as I did 20 years ago. The support available to both children, young people & their parents is brilliant. I recently saw one of AUK children's story booklets in a local salon and it really touched me how accessible support is now, thanks to the work of the charity. 

Alopecia UK holds a special place in my heart as the work they do is invaluable for all of us living with alopecia. The time, effort & resources spent on research is special as it finally makes me feel like we might get some answers as to what causes Alopecia. It gives us hope but more importantly it gives us a voice that is finally being heard - our Alopecia matters and that is really cool. Every time I load the AUK website, I seem to find something new; a new support group, a new resource, a children’s book, there are endless tools to help with your alopecia whether you are at the start of your journey or many years through it like me. There is even an e-learning module to help educate GPs about alopecia and school packs to help teachers too. My hope is to attend the big Alton Towers event in April 2022 which is only possible thanks to volunteers & donations.

Alopecia UK is a small, friendly charity with incredible aims & goals. It is thanks to regular donations, sponsors & volunteers, that everything they do above is possible. It really touches my heart, just how much one regular donation can change someone’s life. You are the reason someone feels they can reach out for support, find support online or find a new book to help explain to their child what is happening to them. That is really special. I know the charity is appealing for new regular donors this Christmas time and I really hope they are succesful. This charity needs to be supported and needs to be here for as long as people with alopecia need it. As Eeyore said: “A little consideration, a little thought for others, makes all the difference”.

You can connect with me over on Instagram at @alopeciaand.me where I hope I share advice that helps others as well as raising awareness about alopecia.  Lastly, I’ll leave you with my favourite Winnie the Pooh quote: “The things that make me different are the things that make me, me!” 

A huge thank you to Jen for this wonderful blog post. If Jen's words have inspired you to start a regular gift to Alopecia UK this Christmas time, we would be so very grateful to have your support. 

Give a gift to Alopecia UK today