Chrissy recently shared her story with us about living with Alopecia Areata for 30 years. She shares openly and honestly about what the journey has looked like for her – and what it might be like for others, too. Read it below!
“I first noticed my Alopecia Areata about 30 years ago. I was living and working on an island on the Great Barrier Reef at the time. I had really long hair, and they used to call me “Leilani” because of my curly long hair and the frangipanis I used to wear behind my ear.
My alopecia didn’t worry me much back then, and I ended up living on the islands for about 10 years.
Fast forward to around 2002, and my Alopecia Areata turned into Alopecia Universalis within a short period of time.
So there begins the journey that many of us have taken.
With complete hair loss comes the exploration of tools to get us through whatever we need. Synthetic wigs, eyebrow and eyeliner cosmetic tattooing, human hair wigs, beanies, scarves, hats. Most importantly supportive family and friends. I dipped my toes in all of these pools. I wear human hair wigs (Freedom wigs) most of the time so that I can blend into society without always having to be the centre of attention. When I have my hair-free holidays (giving my wig the day off), I usually wear beautiful scarves and soft bamboo caps with lovely big earrings and clothes that make me feel good, or other times a funky hat or fluffy beanie.
I must admit, I still get butterflies in my tummy leaving my “girl” at home. I feel very vulnerable and it’s not something I’m 100% into yet, but everyone’s journey is a little different. What I do know is that it’s a very personal experience of growth and confidence in yourself. Everyone embraces their alopecia at a different pace. There is no handbook on this. No right or wrong … no “do this or do that”.
All we can do is share our tips and tools and see if it helps someone become more comfortable in their own skin. I wish that I had met someone with alopecia when I was first experiencing total hair loss. Everything that I have now in my arsenal of confidence I’ve stumbled onto myself. The soft bamboo caps that I wear under my lovely scarves used to cost me $35 each. I’ve now sourced lovely soft cotton ones on eBay for around $5. And op shops are a fantastic source for gorgeous scarves. I’ve found some gorgeous ones for $2 each.
And I really love wearing my beanies… they’re super soft and I have them in all sorts of colours to suit what I’m wearing. I started making them when I was living and working in Tasmania, and I travelled around Australia for about 2 years (driving a 1986 Toyota Corolla hatchback – hilarious!) and I made them as I went, stopping at little markets along the way to sell them to get some money for petrol, food and camping fees. It was an amazing experience.
I mostly wear my beanies in Winter, and especially in bed, because as much as you can put lots of blankets on in Winter, your head still sticks out the top and gets so cold – no hair for insulation. And beanies can be an amazing fashion accessory – not just a head warmer.
I love sharing my beanies with friends, and also with those going through chemo. My beanies are lovely and soft, and aren’t at all scratchy on those sensitive beautiful bald scalps. It’s like a hug for your head and it gives you those warm fuzzies.”
Join Chrissy and other members of the AAAF community and apply for a trip to the Beanie Festival!