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December 17, 2020

“I Lost my Hair when I was 7″—Growing up with Alopecia.

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I’ve never told this story in full to anyone outside a small and carefully-selected circle.

I’ve decided it’s time to put it out there, for my own healing and for the healing of those who find inspiration in my experience.

When I started sharing pictures of myself bald on Instagram, I started receiving so many positive comments about how I had been inspiring people. I hadn’t realized just how important it was for myself and others to know that it’s okay to live alopecia the way I live it.

With every beautiful message I’ve received from the community, a little more of me realized that just by sharing more of myself, I was making an important impact in other people’s lives—which is all I’ve ever wanted.

My hope for sharing my story is to inspire others to be themselves, to share their hair loss, and to know that everything is okay exactly how it is.

My Hair and Identity

When I think about my hair as a child, I feel pretty sad and a little proud. The sadness and pride are both born of the memory of what I used to have—that I no longer have.

Before I lost my hair, I was really proud of it. I always had really long beautiful hair. From a young age, I really felt it was a part of my identity.

My friends and family would talk about how beautiful and long it was. I remember clearly that I had a different hairline than other people, something called a widow’s peak, like a little heart shape.

I was the girl with the long plait running down my back. I can still remember my long, thick, chocolate brown hair, and how it felt in my hands as I plaited it. Or how it felt to have my friends and family braid it. One of my favorite childhood memories was having my friend do my hair as we watched a movie.

The little tugs on my scalp.

It was so relaxing.

Every few months after school, we would go to the hairdressers. The same one, always. I would sit in the same chair, and I would just get a trim, a few centimeters off the bottom.

One day, I felt the hairdressers cold fingers against my scalp. It felt barer and more exposed than normal. She quickly ran to my mum, and I knew something was wrong.

I had a bald patch, about the size of a 50-cent piece.

Never-ending Treatments

Cold hands tracing over my head, creams, ointments, and treatments; the next few years were full of visits to the dermatologist.

Losing my hair as a child and the treatments that came along with it was sad and confusing. Confusing, because the bright-eyed, innocent part of me thought, well, it’s okay, it’s just hair. It doesn’t matter. But, I felt the impact of people asking questions and everyone around me trying to fix it, and part of me became ashamed of what my body was doing. Overtime, I learned that, yeah, it does matter.

I shouldn’t tell anyone.

I should be embarrassed and ashamed.

And, I should try to fix it.

Years went by, and my hair kept falling. I wore it slicked back in a low plait to minimize what people could see. I was really nervous to go swimming, and I lost my sense of freedom, becoming really self-conscious.

I tried different diets and medicines just to try and get my body to act normally. I remember when we tried the celiac diet and mum bought me this awful, expensive, gluten-free bread. Ugh, that didn’t last.

Probably anyone who has been in treatment for something this complicated will understand the constant roller coaster of emotions: hoping the next treatment will work, seeing some progress, then the next month you go two steps back.

It felt like my body was against me.

Feeling Alone

I hated wig shopping. I must have been about 10 when I started wearing half wigs. Hip hats were what they were called. This was probably 2003, and the hair was synthetic, bulky, hot.

Every human wants to belong; it’s part of our blood, part of our conditioning, part of our survival. And I was no different—I just wanted to belong. But, wig shopping had just the opposite effect.

Wigs for kids are hard to find. Most of the affordable wigs look like they’re for old ladies. But my clearest memory from this time is when we went to a small room that had wigs for women going through cancer. I remember wondering why there wasn’t a space for people like me: people who don’t have cancer, but who don’t have hair.

Am I really that alone?

Am I really that different?

Why me?

As time moved on, I mustered the nerve to tell mum that I was ready to give up hope and treatment. It wasn’t coming back anytime soon, and I wanted to start shopping for my own wig. It felt something like growing up and saying you were ready to wear a bra. It felt like an acceptance of time, a new identity, an older, new me. It felt exciting and scary, but I felt really secure knowing my mum would take me through it.

When I was about 12, I got my first full wig.

The lady I met, Martine, who sold me my wig, didn’t have hair, and I was amazed at how openly she whipped her wig off and talked about it. I remember wanting to be just like her: brave, kind, smart, and full of love.

I had a little bit of hair left, and she matched the wig exactly to that color. We shaved my head together, and her and mum worked hard to get me a wig similar to my biological hair. I remember being kind of confused and unsure; it had been so long without hair, so when she asked me what type of hairstyle I wanted, I had no idea.

From that experience on, wigs were an effort to “go back to normal” and reclaim what I had lost. Now, I think I see them differently, but then it was all about undoing what felt like a horrible, confusing, injustice.

Shame and my Teenage Years

I think we continued treatments until I was about 14. They didn’t work, they made my head itch, I missed class, I hated the waiting room and the doctor’s cold hands.

Not to mention, I started entering puberty and school became hard—made even harder because I was embarrassed at how different I was. Being a teen is complicated enough, right? Add a chronic illness that changes how you look, and bang!—you can multiply all the self-consciousness, self-loathing, and confusion by 100.

Moving through puberty felt similar to those childhood years when my body also decided it wanted to change, and it took my hair away from me.

Every year, slowly, the amount of hair on my head would lessen.

Every year, slowly, I felt more alone, more sad, more confused, more ashamed.

In physical education class, everyone would run around, sweat, throw water on themselves to cool down in the intense, dry, Australian heat. And I would kind of just hide.

I can’t speak about my time as a teen with alopecia without acknowledging how it changed my relationship with food. I developed unhealthy food attitudes and habits, fueled greatly by the fact that I just wanted control over one part of my body.

Sleepovers made me nervous.

Having visitors to the house scared me.

I didn’t want anyone to see me without my wig or beanie—I was totally ashamed of my head.

School camp felt practically impossible.

Glimpses of Hope

One thing that felt very clear to me was that I was not beautiful;  I was not pretty—I was bald.

But then, why did people tell me I was pretty?

Why did boys still line up to spend time with me?

I guess, I became aware then, that maybe, just maybe, even though I wasn’t represented by Teen Vogue or on the after-school shows, I was still pretty special because other people seemed to see it.

I wasn’t totally sure, until I had my first real love at the age of 17. To him, things were so clear: I was beautiful, even with my patches of hair speckled around my head. I cried out of relief and confusion when I first took my wig off in front of him, and he told me how beautiful I was, even without most of my hair.

When the entire world shows you that women who are beautiful look a certain way, and they all have long, beautiful hair, the idea that you can be beautiful without it can be extremely confusing.

Even though it felt like it was the most important thing in the world, I recognize now that his approval and the approval of others weren’t actually what I needed to ease my confusion or build my inner strength and sense of self-acceptance.

To be honest, things only got worse from there, as I felt the pressure of being a young adult creep into my life. I felt like I had to have it all figured out at a time when I didn’t even recognize who was in the mirror (‘cause, um, where was my hair?).

It was hard.

I overate.

I struggled with body image.

Much of my adolescent years were marked by depression, disordered eating, toxic relationships, anxiety, and especially, social anxiety.

The one constant that remained for some time was that, no matter how I felt, no matter where I was or how old I was, I couldn’t imagine a life where I didn’t wear a wig as a secret. It didn’t seem like anything else was possible for me.

This was the first thing that had to change.

And change it did, but not without a lot of hard work.

~

Are you experiencing something similar? 

Send me a direct message on Instagram, let me know how you are feeling or find me on my website.

 

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