Living with Alopecia – Linsey’s Story

My alopecia story started when I was a toddler. There are pictures of me with my fine, blonde hair all curly and cute—and then a patch of baldness.

Growing up I had patches on and off.

No one really talked about my bald patches; even my parents were pretty tight-lipped about it. Maybe because a doctor had said, ‘I would just grow out of it’. Well, I didn’t.

When I was twelve, I started to lose my hair in earnest.

We lived in Indonesia, so my mum and I ended up returning to Australia to see a specialist and to get a wig fitted. There wasn’t really any discussion about me getting a wig. I was just told that I was getting it—end of story.

Linsey

The specialist told me I would have to wear a wig for the rest of my life. For me, it felt that that was the end of my life.

Who would I be without hair? Would anyone accept me? Could I accept me? And the big question for a young teenager; how would I ever be beautiful?

 

Because of the silence regarding my alopecia I always felt like it was a big secret, something shameful that I needed to keep hidden. For the next eight years, that is exactly what I did. I kept it hidden. I was so afraid. I was afraid that people would see that I wore a wig. I was afraid that no one would like me because I was bald. I was afraid that my wig would fall off and my baldness would be exposed. I was afraid that I would never be loved.

During that time I also had huge changes in my life. My school in Indonesia was very small and I grew up in a close-knit community. When I was sixteen my family moved back to Australia. All of a sudden, I lost everything in my life that I felt secure in. I was thrust into a huge state school. I had to navigate the waters of being the new kid, in the middle of grade 10. I had to make friends. I had to find out who I was in this new country.

I don’t know about you, but for me wearing a wig in high school was about the uncoolest and weirdest thing that a teenager can do. I had boys trying to peek underneath my hair and pull it gently to see if I felt anything. I had girls demand that I take my wig off so they could see underneath. It was one of the worst experiences of my life.

Obviously, my hiding my alopecia wasn’t working, because everyone knew that I wore a wig.

During this incredibly painful period I also had beautiful friends who accepted me just as I was, who never questioned me or pried into a topic that was so obviously off limits. It’s hard though, to cling to the good things in the midst of a flood of bad. I was ashamed and scared.

I couldn’t be done with high school fast enough and I was so happy when it was finished.

Linsey 2The year after I finished high school, I met my husband. Here was this amazing guy who accepted me and loved me even though I didn’t have hair. How incredible was that?

I couldn’t believe it at first. I told him as soon as I could that I didn’t have hair. I didn’t want to be rejected by him once he found out. But instead of rejecting me, he loved me. I still hid my alopecia from most people but now I had someone who knew me and thought I was beautiful regardless of the state of my hair.

It’s now sixteen years later, I’m still married to my amazing husband and we have two boys. I now have alopecia universalis and I have come to the point of being able to not wear anything on my head in public.

 

Going out in public with nothing covering my head is a giant step. As I give people the opportunity to accept me as I am without hair, I experience a freedom and inclusion that goes beyond just surface appearance. Because when I let people see me bald, I let them see me vulnerable and that’s a really hard thing to do. Just a couple of weeks ago I went to my son’s school with nothing on my head for the first time. Huge! But it’s not like all of a sudden I can now do that all the time. It takes enormous amounts of emotional and psychological energy for me to go out bald and sometimes I just need to rest and wear a wig.

 

It’s a long journey with alopecia and we all have different variations. My hair came back twice during those sixteen years. The year before I got married I finally had a full head of hair again. I had my own hair for my wedding. While I was pregnant with our first son it came back as well.

Linsey 3

The roller coaster ride of excitement and anticipation while my hair grew back and having a full head of hair and then the utter agony and despair at watching it fall out again was excruciating.

I have told my story over and over and every time I do it’s like a little more of letting go. I think that telling our stories helps us in our journey to healing. And I don’t mean physical healing—although how cool would that be?

 

Alopecia, while visible on the surface, is like an iceberg – most of the damage is hidden.

I would love, love, love to have hair. It’s this immense longing inside of me that I don’t think will ever go away. Sometimes it’s so overwhelming it’s all I can do to keep going, other times it’s like a soft niggle at the back of my mind.

The more we accept ourselves as beautiful creatures who are worthy of love, the stronger and more courageous we become.

 

Linsey Painter loves to write stories for children and young adults. Her stories focus on growing young hearts, challenging assumptions and exploring courage in the face of life’s difficulties. You can find her at linseypainter.com

3 thoughts on “Living with Alopecia – Linsey’s Story

Add yours

  1. Thanks for sharing Linsey – I’m the WA Branch Manager for AAAF and I know your story will resonate with and be helpful for many teenage girls who are struggling with the same issues you faced and to your story will provide hope and encouragement . Well done.

    Like

  2. This is amazing. I’m fifteen and have alopecia areata. I have always been scared that it would turn into alopecia totalis or universalis, but seeing how strong you are makes me feel not so alone. Thankyou for being an inspiration x

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Website Powered by WordPress.com.

Up ↑

%d bloggers like this: