What my battle with facial disfigurement has taught me about beauty

"Be happy, smile, and never let anything hold you back."

11 May 2019

When Shelley Hull was born with severe facial disfigurement, now known as Goldenhar syndrome, her condition appeared to be extremely rare. Now a patron of the Goldenhar UK charity, Shelley has become inspired to share her experiences, and her memoir, Shelley, tells the remarkable story of her battle to overcome facial disfigurement.

From a young age, Shelley’s facial disfigurement and hearing loss left her struggling with social isolation, bullying and led to her questioning her self-worth. After twenty complex operations in her most formative teenage years, Shelley had the chance to live a normal life, but finding her place in a society that had previously isolated her was yet another obstacle to overcome. In Shelley, she shares her inspiring story of how she found the strength to overcome the physical and psychological traumas of her facial disfigurement and became the confident, successful and remarkable woman she is today.

Told with humour, hope and honesty, Shelley shares a timely and powerful message of self-love, whilst adding an important voice to the ever-expanding body positivity conversation. Here, she writes for GLAMOUR about what her battle with facial disfigurement has taught her...

Throughout most of my younger years I faced challenges, but I especially struggled with beauty. From the age of 11, when I started senior school, I never wanted to stand out. When my friends started to experiment with hair and makeup, my whole intention was to hide behind mine.

Having long, blonde hair which extended past my waist became my signature look. I always made sure that my hair was draped across my face, like half-closed curtains, gently covering as much of my cheeks as possible to hide my disfigurement. My hair was my disguise, and 'drapes' always made me feel more comfortable, especially whilst I was at school, or out shopping with my mum or friends. I felt people could not really see my full face or the real me. I always felt very self-conscious and embarrassed about the way I looked - I was odd, different from anyone I had ever known. All I wanted was to make myself look better and feel better about myself.

P.E. was a nightmare for me. "Tie your hair back Shelley Skinner!" were the words that grew to haunt me. As I got older, I began experimenting with makeup, and I learned very quickly how to apply eyeshadow. I would apply slightly more on the lid of my right eye to give a bigger appearance to match the other eye, as my right eye is smaller than the left. I also applied mascara to the top corners of my lashes, as my right eye has a limited number of lashes on the top lid, due to the notch in my eyelid. I would apply blusher only to my cheeks, not my cheek bones, as they weren't symmetrical. The blusher also gave my skin a healthier glow, altogether different from my usual anaemic look.

Lipstick was my favourite. There wasn’t a colour I didn’t experiment with. As a young girl,I used to watch my mum apply her makeup daily before she went out. I remember thinking how pretty she looked and that if I could wear makeup, perhaps it would make me look prettier and my face wouldn't be so noticeable. Obviously this wasn't the case, but it helped me to feel better about myself. I had to try.

After some of my surgeries, I remember trying to apply makeup once some of the bandages had been removed. Often on the ward, I would sit on the hospital bed with a mirror, and gingerly apply each stroke of makeup: soft eyeshadow, blusher, and finally lipstick. Even with stitches and a swollen face, I'm sure this helped me work towards a speedy recovery and improve my overall sense of wellbeing.

Looking back now, I know what beauty has taught me. I believe there is nothing wrong with trying to make yourself feel better, whether it be with makeup, clothes, or hair. But the most important thing, however, is to be kind to yourself. Beauty comes from within, and people will see that if you allow them. Be happy, smile, and never let anything hold you back. But most of all, be you.

Shelley by Shelley Hull is out on 23rd May for £9.99 in paperback or £4.99 in e-book.