Growing up with alopecia universalis was the most painful experience yet purposeful. I hope my story will inspire you to learn to love yourself with alopecia and live a life full of purpose.

I still remember the day when I lost my hair entirely. I was 10 years old and just got home from school. I quickly ran upstairs to my parents’ bedroom, sat in front of the mirror and took off the hat that I was wearing because I was so embarrassed to let any of my classmates see my bald patches. And then finally, I slowly stroked my head and the last few strands of hair came off. I started off having coin size bald patches on my head 3 months ago and then it spread over my whole head. Finally, it had all gone – including my eyelashes, eyebrows, and every single strand of hair on my body. It had all gone.

As a young child, losing hair was just part of my difficult journey. The hardest part was not knowing what it was and why. You see, I grew up in South East Asia, where medicine/research aren’t as advanced as the US or the UK 20 years ago. Doctors couldn’t diagnose my condition and teachers, other parents, and kids in school thought something was wrong with me. My parents were devastated. The not knowing whether my hair will grow back despite trying so many medicines was really upsetting.

Let’s talk about feelings. I've felt anxious, scared, isolated and had extremely low self-confidence, I 

always thought that no one would ever love or marry me. I had chronic depression since I lost my hair. I remember I had days where I couldn’t eat, sleep, or even get out from my bed. I felt so insecure, daily, to walk out the door with a wig and not-knowing how to manage other kids who teased me in school. I became a very angry child because of the teasing and the loss of hair, I got angry if anyone talked to me about my hair. I was jealous of my friends who have hair and lashed out when people teased me. I lost a lot of friends mainly because of who I became and how I treated them. I was an ambitious and active child who loved sports, art, and wanted to achieve many things, but I gave up and stopped doing anything. I worried that if I became active, people would notice my alopecia.

Fast forward to today - I am the happiest that I can be. I have achieved the things I want to achieve. I have made loads of good friends, I’ve backpacked and travelled around the world in my 20s, and obtained 2 Bachelor’s Degrees. I’ve competed and sang in different countries with a Malaysia world-renowned choir. I have a good and stable job plus a very loving husband.

If I could share some wisdom to my younger self from an older, wiser me, it would be this:

  • Happiness is a choice but being unhappy is not a failure. There is nothing wrong with feeling upset about losing your hair, you are only human. You are more than capable of making good choices in life, to create a better future without hair, and a better future makes you feel happier and healthier.
  • No one and nothing, including your hair, can define who you are because you will be the only one who can decide who you want to be. You don’t need your hair to be kind, clever, loving, fun, positive, etc. You can be who you want to be with or without hair.
  • Let go of what you can’t control and focus on what’s good in life. You can’t control hair loss, so let that go, it’s hard but eventually you will. Trust me, you will. Enjoy and focus on even the smallest things in life. It can be friends, hobbies, things you love, a loved one who loves and supports you or even just enjoying your time at the beach or a movie in a cinema.
  • Don’t put your life on pause just because of Alopecia. You have ambition and dreams to do lots of things you want to do, but you gave up and stopped doing anything because you were worried that if you became active, people would notice your alopecia. Stop telling yourself ‘let’s wait until my hair grew back then I’ll do……
  • Always ask yourself what you can do better for the society and yourself. You have a purpose in life, having alopecia will make you a stronger, a more considerate, understanding, and empathetic person. You’ve been through a lot, use that pain and experience to help others in life.
  • Don’t ignore your feelings and accept the grieving stages. Get help if you need help, speak to professionals if you need to, there’s nothing wrong with getting help.

The one last thing I would tell my 10-year-old self is that I will be ok living with Alopecia Universalis. Life is good, not always but mostly good, when I focus on the things that is within my control. I shouldn’t feel embarrassed of having alopecia because I am who I am, this is me and I am beautiful the way I am.

I don’t need hair to define my future, I’ve achieved many things and gained the love and respect I have without my hair for the past 25 years. Continue to do so, live life to the fullest and help others who are struggling.