Finding Balance with Alopecia

By Linsey Painter

I’m thirty-five years old and I’ve had alopecia in its various forms all of my life. Yet these past two years have been the healthiest I’ve ever experienced with alopecia.

My idea of healthy alopecia has to do with my whole being.

Healthy on the Outside

 When people see me with a scarf on my head—or just my bald head—most immediately jump to the conclusion that I am sick. I’m sure you know what I’m talking about.

So when I’m doing the Red Arrow walk in Cairns or bike riding with my two boys to school I often get surprised looks.

Exercising can be hot, sweaty business and taking off my cap is the fastest way for me to cool down. I’ve found that while I’m chugging up the steep path and stairs on the Red Arrow with my cap on people usually ignore me, they’re in their own little world of music and breathing, and let’s face it, just trying to make it to the top without falling over.

When I take my cap off all of a sudden I see people’s heads lift and faces break into a smile.

People say, “Hey.”

And suddenly there is a connection.

It makes me feel good to know that people see me as a healthy individual. I don’t have hair and yet I’m obviously not sick either.

Embrace Alopecia: In Retrospect

 

If you’d have asked me 5 years ago if I was embracing alopecia, I would have absolutely said yes.

How could I not be? I was a Youth Ambassador for AAAF, I did talks at schools informing kids about the condition, I wore scarves sometimes and no longer depended on my wig like I had when I was younger. I would have definitely said I was embracing.

But man, hindsight is 20/20.

Beating the Heat while living with Alopecia: The Tropical Challenge

By Linsey

Living in the tropics and coping with alopecia has been an interesting challenge for me.

I grew up in Indonesia practically on the equator. It was hot, sticky and 100% humidity. When I first got a wig I still had quite a lot of hair on my head— hair that I was not ready to give up on or shave off. I was thirteen and I didn’t want anyone to know I was going bald. I was so ashamed. So I wore my wig on top of my hair, sometimes even to bed. I broke out into heat rash on my head and my face. My skin was not happy and neither was I.

“Alopecian” – A Language Guide

ALOPECIAN
[Pronunciation: al-uh-pee-shee-an]

Noun (Informal): A person who has a form of the hair loss condition known as Alopecia or Alopecia Areata.

Plural: Alopecians

Examples:

• Alopecian women and girls often have a very different experience with the condition than men and boys, but the common assumption that alopecia is ‘easier’ for males is incorrect.
• Having been an alopecian for most of my life, I have a very different experience in crowded, public spaces than people who do not have such a visible difference.
• As an alopecian, I loathe being called an alopecia sufferer.

5 Ways to Increase Confidence and Self Esteem

For people living with Alopecia Areata, confidence and self-esteem can be severely impacted by their condition. AAAF’s Support Ambassador extraordinaire Stef is here to help, with her five tips to increase confidence and self-esteem. 

Why GST on Wigs Matters To You

If you’ve been paying attention, you may have noticed that AAAF’s social media accounts have been busy with information about GST and wigs, petitions and demonstration rallies. It’s easy to think that taxation on wigs is a tiny issue, only affecting a tiny portion of people, and only having a very small impact on those people. If you don’t wear wigs, you might find yourself thinking why on earth does this matter, and why on earth would it matter to you.

For people with alopecia, the question of Goods and Services Tax on wigs can be, quite literally, a matter of life and death.

Taking the Plunge: Telling people about your Alopecia

There was a time in my life where I would’ve preferred to run 10 km in spandex through Melbourne CBD than tell any of my friends about having Alopecia. Luckily, as I got older, I realised that people probably wouldn’t act like I’d committed a mortal sin for having the audacity to get a chronic illness. It was a process. That being said, I’ve had some amazing experiences and some not as good experiences when telling friends about this condition. Whether you want to tell your whole school, someone at work, or a new friend or partner about your alopecia, it can feel pretty scary. But with the right preparation and the proper tools, it doesn’t have to be. Learn from my mistakes Young Padawan and stock up your arsenal of awareness weapons. 

AAAF’s New Year Resolutions

Happy New Year! We hope you all had enjoyable and safe holiday season and are feeling refreshed and excited for the year ahead.

Before we took our holiday break, we were talking here on Love, Alopecia about all the things AAAF has achieved over the last 12 months. This week it’s all about where we want to go next. That’s right, it’s time for AAAF’s New Year Resolutions. These goals are our commitment to our community that we will never stop striving to do better, be better and help others to have a positive journey with Alopecia Areata. So what’s in store for 2017?