Georgia Van Cuylenberg: ‘Losing my hair has been the best gift’
-Sep 27, Hannah Hargrave , Health -
Georgia Van Cuylenberg was known as the girl with the gorgeous hair as a child, so when it fell out at the age of 20 it was understandably devastating for her. But 11-years later she stands bald, proud and confident and insists that alopecia changed her life in the best way possible.
In honour of Alopecia Awareness Month, Georgia Van Culenberg, who is a vivacious philanthropist, actress and mentor tells Lumity about living with the condition she now calls her “gift”.
What’s it like discovering that you have alopecia?
Georgia was just 20-years-old when she lost her long blonde hair. She had moved to Hollywood from her home country of Australia to live out her dreams in Tinseltown. With the help of her gorgeous tresses she landed hair modelling and TV hosting gigs and even had her own children’s television show. So, when her hair fell out she knew the life and career she had been picturing since she was tiny was about to change forever.
‘I remember standing in the shower watching it all go down the drain, too scared to get out as my hair washed down by body as though it was never attached,’ Georgia, 31, tells Lumity. ‘When I finally did look at myself I hardly recognised the woman in the reflection. There were huge patches of bald scalp and as I brushed what was left, I watched my sink fill up with hair. I didn’t know what was happening and I was so scared.’
But even at that scary moment Georgia didn’t cry: ‘I had to just keep telling myself this is happening for a reason!’
What causes alopecia?
Georgia was to learn she was suffering from a condition which approximately 147 million people worldwide have or will develop at some point in their lives, alopecia areata, an autoimmune disease which has no cause or cure.
‘There are so many theories out there on how it happens but the most important thought to dispel is that it is caused by stress,’ Georgia explains. ‘It isn’t. Stress can cause other forms of temporary hair loss like Telogen Effluvium that many women can experience during pregnancy or others see during work and life troubles but this is different to alopecia areata.’
Dealing with a diagnosis of alopecia
Under the advice of professionals in her business, Georgia quite literally hid her condition under wigs and hats for an entire year after her diagnosis.
‘People around me had told me I had to keep it secret or it would ruin my career,’ she tells us. ‘But I realised this wasn’t who I was. I hated lying to everyone and acting like everything was fine when it really wasn’t. I understand that those people meant well and that they were trying to keep me safe and protected but they were thinking on my behalf based on their way of seeing the word – fear.’
Fortunately for Georgia she says fear has never driven her and she decided to instead do the opposite of hide and come out fighting in the hopes she could help others.
‘I made a film ‘Baby Let Your Hair Hang Down’ to share with everyone the challenges I was going through in the hope that it would help even just one person to stop keeping their true self a secret.’
Treatments for alopecia
Throughout her year of ‘hiding’ Georgia did still try to seek ways to get her hair back and she spent thousands of her well earned dollars on treatments and wigs.
‘I went through every treatment possible to try to get it back, including acupuncture and steroid and cortisone injections which left my head blistered and weeping,’ she says.
In the end she decided to stop seeing her alopecia as a burden but rather as an amazing gift. She stopped treatment, shaved the wispy bits of hair she had and dared to bare her beautiful bald head.
How do people react to a young woman with no hair?
Georgia was overwhelmed by the love and support she got from so many people, but she was also realistic that she was dealing with the loss of her hair in a town and a business where beauty standards are like no others.
‘In many ways my career did hit a bit of a rock as all the roles I went up for previously kind of stopped,’ she admits. And when she did still audition in a wig she says: ‘I think I still carried that nervousness or awareness into auditions to be honest.’
But she wasn’t ready to quit the industry despite some negative and difficult comments by casting directors.
‘I just choose my rooms more wisely. I chose to work in voiceovers and hosting where I find the value set is a bit different and it is a warmer safer place to play. I sometimes wish everyone in Hollywood could get a little bit of alopecia for a year – it would make it a much more loving and joyful place!’
The hardest thing about losing your hair
It did take Georgia a little time to see the good in what had happened to her and looking back when she was struggling to come to terms with her condition she says the hardest thing was knowing some people would never be able to accept her.
‘The part that took the longest to truly feel positivity about was accepting that there are some people for whom my hair loss or my openness with my hair loss would be too confronting,’ she says.
‘When you have learned to accept yourself as you are and be proud but also vulnerable and then somebody rejects you or pushes you away it can be really hard.
‘Even though I understand that their pushing away had nothing to do with me and more to do with their own pain, their own fears and the picture of their life that they are trying to grasp onto, it still hurts when someone can’t look beyond their own pain to see the beautiful moment of connection that could be possible when someone offers you their vulnerable true self.
‘The first few years when this happened it was very hard not to take it personally and want to hide myself but I am so grateful I stayed true to my belief in honesty because those moments happen so very rarely these days.’
Learning to accept hair loss
Georgia learned to accept her hair loss and build her confidence back up by taking the time to look for beautiful qualities in other people:
‘By doing this you can do wonders for finding the beauty in yourself. Listen to your heart, listen to your mind and work on making those the most beautiful part of you. As you start feeling your inner beauty and celebrating the part of you that truly makes you who you are then the outside details really don’t seem to matter so much.’
For Georgia she says she looks for ‘a smile’, ‘a welcoming twinkle in the eye’ and at how they treat the people around them.
‘I don’t care what shape their body is but I do care about how they are using that body. Is it to show warmth, kindness and softness? And I couldn’t care less what distance you have between your eyes or how straight your nose is but I care so much if I can see your heart in your face – that is beauty to me.’
Bald is beautiful
‘I often say that Alopecians look so beautiful when they are bald because they have no hair to hide their hearts under,’ explains Georgia. ‘But I don’t think it has to take becoming bald to live from your heart and when people do – that’s truly beautiful.’
Alopecia can change your life for the better
In addition to continuing working in the entertainment industry Georgia – who now works for numerous charities – also threw herself into her work mentoring children and building up their confidence, something she says she could do way better after losing her hair.
‘It was the gift that enabled me to connect with so many who didn’t believe I understood them until I lost my hair. For years I had been telling kids to be strong and to believe in themselves no matter what challenges they faced and it wasn’t until I lost my hair that they really trusted that I knew what having challenges felt like.’
She says they listened and trusted her more deeply and it changed her life in the best way.
‘I got the chances I have now had to speak to millions of people through mainstream media – what a gift my alopecia was!’
Will my hair ever grow back after going bald?
While for the most part Georgia is bald, but her hair does still grow back from time to time meaning she has to go though losing it over and over again.
‘My hair coming and going can be a bit of a bummer sometimes,’ says Georgia, whose hair has come and gone over five times since her diagnosis. ‘You never really get used to it falling out. First few times I shaved it all off just so I wouldn’t have to notice all the hair falling. This last time I’ve let it grow so you notice every hair that comes out. It doesn’t so much hinder life but it can make a few moments more challenging.’
Ways to disguise hair loss
Although she’s confident being bald that doesn’t mean Georgia doesn’t want to sometimes have her long hair back or find ways to disguise it if it’s grown back a little uneven.
‘For example I am missing an inch or so of my hair line right now so I wear headbands sometimes. But that’s when you realise that headbands don’t go with every outfit.’
Georgia may have lost her hair but she hasn’t lost her sense of humour.
‘In fact you end up looking like a gogo dancer most days. But I don’t really see these as negatives just funny moments that are part of this adventure. Sure I’d love to have my eyebrows back, but how can I really dwell on that when each time I notice it I’m also reminded of the incredible gift of perspective and gratitude this experience has been – I wouldn’t trade all of the magic for my eyebrows for one second!’
Feeling beautiful when you’re bald
She still takes pride in her appearance and makes no excuses for that.
“I think that is a trap a lot of people fall into that they go through something like this and still feel guilty for wanting to wear make up or caring about their outside appearance, I think it is totally fine to still want to dress up, put on make up and get fancy. Losing your hair doesn’t mean you stop caring about looking your best – you just have a new best.”
Advice for alopecia sufferers
It’s been quite the journey for Georgia to get to the place she is today but she wants anyone else who is living with this condition to know they can not only learn to accept alopecia but they can learn to love it.
‘If you are finding it difficult to deal with losing your hair know that I am sending you the biggest hug ever invented. I know how hard it can be and how alone you can feel. You are not alone! Every single person you know has a huge challenge they might be keeping from you – hair loss just happens to be yours. But I know that doesn’t make it feel much better today.
‘Trust that this will get better and to focus on the little positives in each day and celebrate the good stuff more than ever before. Don’t see yourself as suffering but instead to start to embrace living with it and then one day learning to thrive with it.
‘It’s a long journey so please don’t beat yourself up if you aren’t there tomorrow. It is ok to have bad days and days you wish you looked different – we all have those. But listen to your heart and soul as much as you can because that is what makes you truly beautiful.
‘Rather than focusing on why you have been cursed ask what you can do with this incredible gift and how it might be able to help someone else in this world. I have found when you have to heal your own pain because you want to help others that pain heals way faster than if you are thinking about it all day.
‘I know so many Alopecians now that don’t want to get their hair back because they see this as their most beautiful self and I think that comes from a lot of honest sharing and connecting with all of the beauty in the world – not pinning it to one thing like hair.’
Where to find alopecia support
There are a number of organisations, communities and charities who can help if you or a loved one has Alopecia and Georgia has some suggestions.
‘Reach out to all of the communities out there like NAAF or Children’s Alopecia Project. You can find us on Facebook and connect. We are a loving silly bunch and we all went through what you are going through.’
She runs her own non profit organization in the US called Arts Bridging the Gap which uses arts education to improve the lives and communities of vulnerable youths.
Georgia also runs a non profit in Ethiopia – Women’s Community Leadership Program – empowering women out of extreme poverty.
She is the chairman of an organisation in Uganda called Hearts for Community Action that works on changing health, education and sustainability outcomes for children and families in rural Uganda.
In the US Georgia works closely with The LA Mission, Hopemill Inc and United Way on finding solutions for the city’s homelessness crisis.