September is Alopecia Areata Awareness Month, so I’ll be posting a few more stories about my life with Alopecia and in a perfectly vulnerable moment – maybe sharing my embodiment journey with it so far too.
As a child with Alopecia Areata, I’d lost pretty much all of my hair by the time I was 5 years old. I never wore wigs. I remember feeling a strong attachment to being real and I felt like if I wore a wig I was hiding my true self. Looking back it feels like an odd thought for a child, but over the years it has shaped many of my experiences as an adult.
Though I don’t recall being teased often, I do remember being stared at a lot – not so much by kids at school as strangers in the street. Sometimes I’d stare back, sometimes my mum, dad or sisters would say something if it was an adult. My family were super protective of me, and we all had our own responses. At that age I wasn’t so much about educating others as I was about wanting them to just leave me alone.
In line with this, I also just let people think what they wanted to think about my condition. I was in about grade 3 or 4 when a van came to our school to educate kids about Leukemia. As I remember it, they put on this cute puppet show where everyone is accepting of the little bald puppet kid and we learnt that it was okay to look different, that cancer was not contagious and that we need to understand and support others.
At the end, they announced they “knew” there was a little girl at the school who was also sick so they called me out in front of everyone and gave me an enamel pin and told me I was brave. I didn’t know what to do or say, so I just said thank you and sat back down.
I’m 100% sure my parents had spoken to the school about Alopecia, but not a single teacher said anything (that I know of or remember), and when I spoke to the school librarian later in the day, and she asked me why I hadn’t spoken up. I mean, what was I supposed to say. I was about 8 years old. I even remember feeling like maybe I’d done the wrong thing, and I’d get in trouble.
I’m sure the puppeteers and their organisation had the best intentions, as is often the case when people inquire into my health, but it left me uncomfortable, embarrassed and at a loss as to why no one said anything. I’m sure my family and friends were just as confused as to why I didn’t say anything.
As a child I found it very hard to speak up for myself in these situations. I felt not only my own embarrassment at standing out, but also found myself in positions where I had to correct adults, and even though I thought that they should know better than to stare or pass comment on the appearance of others, I was worried I’d embarrass them as well.
This fear of speaking up stayed with me for years, despite experiences like this where I knew I was the only one who could or would. I was in my early teens before I started actively correcting people and educating them on Alopecia, and in all honesty though, I still don’t always do this. Sometimes I smile and nod, sometimes I go out of my way to really educate them on Alopecia Areata, and sometimes if it’s obvious they’re going through chemo I tell them I don’t have it, but it has touched my life and I ask how they’re doing.
Everyone I think at some point in their life has felt different from those around them. We feel like we stand out, like people are staring, like we’re getting laughed at or we don’t fit in. When this difference is super obvious and out there those around us often feel a lot more comfortable commenting on or touching us, especially if they think they can relate in any random way – the classic example being pregnant women and their bellies. I have chosen to live my life without hiding my baldness most of the time, a very personal choice that is still driven largely from that tiny little girl who wanted to be her true self. This has come with a variety of experience in interactions with others and I’m hoping to share more about my feelings on that over the coming months.
If you’d like to read more about Alopecia Areata and my experiences – I have a dedicated page to those posts.