Supporting people to find their own solutions to improve well-being

My Alopecia Journey

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My alopecia journey began when I was 24 although I did not know it at the time. I went to my hairdresser one Saturday morning and asked her to cut my hair very short and spiky on top as was the fashion in those days. She told me that she wouldn’t be able to cut it too short because of my bald spot to which I replied “What bald spot?’ She proceeded to give me a mirror and to my surprise, I saw a 15mm bald patch on the back of my scalp. Over the next couple of months, the hair grew back and I didn’t think about it again.

At the same time, my mother was in hospital having a major operation and contracted a golden staff infection. She was transferred into isolation and remained in hospital for over 6 months on various types of medication. Upon her release from hospital, her hair started to fall out and within a couple of months it was all gone, including her eyebrows, eyelashes and all body hair. We were told it was alopecia universalis and that it more than likely was caused from the stress and medications she had been taking and that there was nothing that could be done to re-grow her hair.

Mum being brought up through the depression took this in her stride, went shopping for a wig and got on with her life, she had never been one to put stock in her appearance and never wore makeup apart from lipstick if she was going out. She also did not discuss the situation with anyone, so I really do not know how she felt but I’m sure she would have been crying at night at the loss of her beautiful tresses.

Over the next couple of decades, my “bald patch” would come and go but I never even thought to link it to Mum’s alopecia. I was 48 when I lost all my hair. Just prior to Christmas I found another bald patch and by the end of February all my hair was gone. It was falling out in clumps, on my pillow, in the shower and I was afraid to brush it because I ended up with more in the brush than on my head. I went to work with a scarf on to try and hide the fact and a couple of young girls made some rude remarks about it so I went into the city and bought my first wig, I wasn’t happy with the style but the lady that sold it to me assured me it suited.

Mum was sympathetic but we still did not discuss our feelings.

My husband and I went to the Doctor and he referred me to a specialist and I tried a number of different treatments stopping short of injections, I had been doing a bit of research and had drawn my own conclusion that it was not curable and that I would probably never re-grow my hair either. It was at this point that I started to wonder if it was hereditary and worried if my own daughter would also be a sufferer.

I really missed my eyebrows and eyelashes much more than I missed my hair, it's easy to put a wig on but it was much harder for me to do my eyebrows and lashes. I felt like one of those faceless dolls you see hiding in the corner of the room.

I was feeling very sorry for myself and one day a good friend pulled me aside and told me "wake up to yourself - you're still the same person on the inside and it's not life threatening". Some times tough love is what you need and from that moment on, I decided to embrace my condition. I went online and found a support group. I went to workshops to learn how to draw on eyebrows and put on false eyelashes and started to feel a little more human again.

Then one day, another friend told me about cosmetic tattooing, she had thinning eyebrows and was going to get hers done and asked if I would be interested in getting mine done. After checking it out, I decided to go ahead.  I felt so good once I had them done, they looked great and I even got eyeliner on both the top and bottom lids of my eyes. The eyeliner hurt a lot, but as they say – no pain, no gain.  

Telling people about my condition was hard at first as I really didn’t want them to know I was bald, but when you wear a wig, it’s hard to do some of the things you used to do, like swimming, running and even going out on a windy day.

I then found a website for Freedom suction wigs and decided that no matter what the cost, I wanted one of those. I hated the feeling of scratchy, itchy, hot wigs and the uncertainty of the weather blowing my wig off. A consultant came to my home, took a plaster cast of my head and within a few months my wig arrived. It was great and no matter what I did, it would not come off as I proved by being towed on an inflatable donut behind a speedboat. This was another positive step in my journey.

One of the highlights of my journey has been being involved in a project to raise public awareness and acceptance of alopecia. The project was called
The Turning Heads Art Crown Project and was the idea of Helen Beasley from Rainbow Face Painting and Body Art in collaboration with Lina Hayes -a local photographer.  Helen was inspired by the very moving portraits of Canadian henna artist and photographer Frances Rhodes Darwin, to embark on an art project capturing empowering and positive images of women suffering hair loss.

I became aware of the project through the AAAF (Australian Alopecia Areata Foundation- A support group for people with Alopecia) with whom I had registered. The project involved a number of people ranging from age 2 to age 60. I was so excited to be asked to be a part of the project that I flew 920kilometres from Brisbane to Sydney to participate.
I arrived on a Saturday morning and went to Helen’s home address where I met with another lady (Nicole).
Helen painted a henna tattoo on both our heads and we then headed out to a local coffee shop to have photos taken. I had only ever been out in public once before without a wig on and that was a very short outing. I was scared at first, but with the support of Nicole, Helen and Lina, I soon felt comfortable. After we left the coffee shop, we had further photos taken in a local park. People were approaching us and asking what we were doing and it felt good to be able to explain to them about Alopecia and the project. It was a wonderful experience and very empowering and after a number of years, I have built up the courage and I got a permanent tattoo.

We were able to achieve front page coverage in our local paper and an article on the project in a national magazine.

The project images also inspired a song (“All of the Strands”) written by Reuben Rose of Sydney Band "Redwoods" and were the subject of blogs all around the world. It has been amazing!

You can listen to the song here:

My husband has been very supportive throughout my journey and he loves me just the way I am. At first, I found it hard to believe that he could still love me looking the way I do, but his reassurances sank in and I also began to love myself again.

I decided to get involved supporting others with the condition and in January 2014 I took on the position of Branch Manager in Queensland for the Australian Alopecia Areata Foundation.  I enjoy being able to help those with the condition learn to believe that they can still achieve whatever they set their mind too. Alopecia does not prevent us from leading a normal healthy life.

I now look at all the positives that Alopecia has given me - No more waxing, no more shaving my legs, no more hairdressers and I save heaps of money every year. Having the latest hair style can make you feel pretty but you don't need hair to be beautiful, as my friend told me, that comes from within.