“Most people think I have cancer… I don’t. And yes I am lucky that I am in good health. But the pain of losing my hair is not made any easier because I am healthy.”
That’s my mum.
She has a medical condition that doesn’t make you sick, lower your life expectancy, diminish your physical health or make you take sick days. But it IS shit to get diagnosed with and it deserves more recognition.
Alopecia causes sufferers to lose their hair. There are varying degrees of the illness, with some losing sections of their hair and others, like my mum, who lose everything. Her story inspires me every single day.
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As women, our hair is a big part of our identity. So imagine losing that. Losing your hair, your eyebrows, your eyelashes. Sufferers face a monumental mental and emotional battle as they lose a key part of their identity, especially as women.
Mum found out about her condition 10 years ago. It started with some small hair loss, but then bigger chunks started to fall out and we knew something was wrong. She was absolutely devastated when she found out what was causing the hair loss – alopecia.
Initially, the hair loss was minimal enough that she could disguise it, but eventually it was too much to hide. I still remember the day we went to a wig maker. Mum was so incredibly brave, but I held her hand as the hairdresser shaved off what was left of her hair.
For the first few years after losing her hair Mum felt like her femininity had been taken away from her and that she was no longer attractive. It was hard to sit back and watch her go through this struggle. As a daughter, I think it’s only natural to see your mother as a beautiful woman, so it was hard to hear her self-doubt.
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Another challenge Mum faced after her diagnosis was how she was going to deal with the illness. She had to decide whether she was going to be completely open about it and wear a headscarf, or try to disguise her hair loss and opt for a wig and some clever makeup tricks.
She chose both.
Amongst family and friends she wears a headscarf. However, in public and at work she wears a wig and applies makeup that hides the lack of facial hair.
In order to find a wig that looked natural and felt comfortable, Mum had to try multiple options. Some were made from netting which was itchy. Others worked like a suction cup and were very tight and uncomfortable. Her current wig is custom made to fit her head and is made from real human hair. And it looks great. However, wearing wigs has limitations.
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She can’t, for example, wear her hair up in a ponytail, as it then looks obvious that she is wearing a wig. When it’s windy, the fact that it’s a wig can become apparent. When it is a hot day, the wig is incredibly uncomfortable and sweaty.
After working an eight-hour day, the first thing Mum does when she gets home is take off the wig and feel the relief. She often gets horrible headaches from the pressure of having a wig on her head all day. No matter how light these custom wigs are, they are never perfect.
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And then there is the cost. A human hair, custom-made wig is about $3,000. They also need to be replaced every 18-24 months. There unfortunately isn’t any financial support available from the Government, as they do not consider a wig for alopecia sufferers as a necessity… which is an interesting conclusion when we live in a world so focused on beauty and physical appearances.
My mum has now had alopecia for 10 years. She still has days when she just needs to cry and I am the first to be there, arms open. But she has learnt to manage her condition and she hasn’t let it beat her.
I think the hardest part of mum having alopecia is the lack of knowledge about it. So many women hide their condition, Mum included, because people just don’t get it. I hope that by sharing her story more people will be aware of the condition and how it affects the lives of those who have it.
My mum inspires me to look past having a bad hair day or not feeling great about the way I look. She is the most beautiful woman I know, even without a single hair on her head. Seeing my mum overcome alopecia has made me realise that true femininity, beauty and confidence is a mindset. We can’t control the way we look, but we can change the way we think.
Has someone close to you struggled with alopecia?