My Alopecia Journey – Kerri

Kerri was one of the recipients of the AAAF Sponsorship program which ran in 2019 and early 2020. She is a talented artist who put together a special exhibition about her journey with this condition titled Understanding Alopecia.

I went through a very stressful time 6 months before my hair started falling out, I never thought anything of it and kept on with life as you do. I did have a bit of hair loss, but I never really took much notice until I went to get my hair cut one day and the hair dresser told me she had found two round patches on the back of my head about the size of a twenty and ten cent piece. She suggested that I go to the doctor and said it could be alopecia, I had never heard of Alopecia before so this started a strong relationship with google researching Alopecia. This period of time was the worse as I didn’t really know what was wrong with me, the unknown and thinking it could be something worse was worrying.

Followed by blood tests and trying different creams, the doctor confirmed I had Alopecia, but nothing we tried worked. Then being referred to a dermatologist, she tried more creams on me, that also didn’t work. She suggested we start injecting steroids into my bald spots which by then were quite large, it was awful and painful and I felt my specialist had no sensitivity in treating me. I only let her give me the injections once and decided to stop going to the dermatologist as it didn’t seem to be working anyway. By this time my hair was falling out by the handfuls in the shower, hairs on my pillow every morning. I knew it was time to take control of the Alopecia and got a friend to shave off what hair I had left.

Taking control of the disease made me feel so much better, even though it was a shock to see myself for the first time with no hair. I was prepared for this as I had taken a six-hour bus and train journey to Melbourne with my Mother and a friend for support to buy a wig. Trying lots of wigs on wasn’t a great experience leaving my head feel sore and aggravated by the constant on and off with the wigs. Feeling pressured to take one even though I didn’t really like any of them, wearing the wig felt hot, itchy and uncomfortable. I wore bamboo caps at home as they were more comfortable, it took about a month and I didn’t wear the wig at all, and now just wear the bamboo caps all the time. I may buy another wig for a special occasion somewhere in the future, but will definitely find a nice relaxing place to find the right one.

Thinking this was it with my Alopecia and I could move on, I was wrong and I started to notice the hair from my eyebrows and eyelashes were disappearing and everywhere else on my body too. My eyebrows and eyelashes were the hardest to come to terms with, as they help frame your face and give definition. Many more hours on google and more trips to Melbourne to get my eyebrows feathered, which is a form of tattooing. Make-up helps disguise I don’t have any eyelashes and I would never leave the house without make-up, but now I am pretty content in my own skin and I don’t worry if I wear make-up or not.

Then came the nails and I noticed they were very thin and ridged and easily split, so I googled Alopecia nails and to my amazement yes it can affect your nails, damn it. So sticking to a special diet and taking Hair and Nails tablets, eventually my nails strengthened and become stronger than they had ever been. I am thankful for this and my nails are still doing ok.

It has been a long journey of ups and downs but I am lucky I have a personality that likes to look on the positive side of things and to be grateful for all the good things in my life. Thinking how lucky I was, how lucky I was for it not to be some other incurable disease or that my immune system didn’t decide to attack another part of my body, I am so grateful for this. Thinking to myself “oh well its only hair, otherwise I am healthy.” I would tell myself the positives like I don’t have to spend money on hair products, that I’m never going to have to dye my hair to cover the greys, I did not have to spend a small fortune at the hairdresser on haircuts, I have more time in the shower just to enjoy it and I don’t have to worry about shaving my legs, and the list goes on.

There have been times when I have felt deflated by Alopecia, but I have been lucky as I have used art to help me keep going in a positive direction in times of dissonance. I have used art all my life when going through tough times, even as a child.

I have had an interest in arts and health for quite a few years now, it’s been helped and supported from my boss in Community Services with our local council. This has allowed me to see how engagement with the arts can help people with health and well-being. The arts can help people to meet challenges in their life like recovery from physical or mental trauma, anxiety, depression, stress, mental health, loneliness. Because of the benefits the arts provide, it then also helps to strengthen our communities as well.

This brought me to wanting to help people further and I decided to do a Masters in Therapeutic Arts Practice with MIECAT in Melbourne. I have just finished my second year with one year left to go. I do not know if I would have done this course if it wasn’t for my Alopecia, I feel as a person I have grown so much stronger with a sense of empathy to how people feel. The alopecia has taught me that hair doesn’t define a person, the same as the colour of your skin doesn’t define a person. I may be comfortable with my Alopecia now, but some people may not feel this way for many reasons to them. I do hope with time they too can come to see the strength it can give you and therefore the freedom to be one self.

I like to remind myself to always think “how you treat others is more important than any physical or monetary attributes, always try and be kind as we never know what another person is going through”.

To me, this is who I am and I am happy to be alive.

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