Shelley reflects on how the challenges she's faced have made her a stronger person

Shelley’s story: ”Having a visible difference has made me the person I am today”

Photo of a woman with blond hair, smiling at cameraShelley has Hemi Facial Microsomia, a condition which commonly affects the development of the lower half of the face.

The most important thing is to be kind to yourself.

I was born in the UK in the early 1960s with a condition called Hemi Facial Microsomia as well as a heart murmur, deafness, two different sized ears, and an additional smaller ear located next to my left ear. I also had partial blindness in one eye, and the other eye was smaller with part of the eyelid missing.

My surgeries began when I was just nine months old and continued until well into my late 20s. My case was considered extremely rare and, throughout the years, my mother was asked if she could take me to many teaching hospitals for student doctors to examine me.

A sepia photo of a young girl with shoulder length blond hair smilingSchool life, apart from the many operations, was what I found most challenging. From a very young age, I wore hearing aids, which were nothing like they are today. Mine were connected from a compact box which was held in a brace strapped to my chest with wires reaching into each ear.

Doctors advised my parents to send me to school for deaf children. The school was far away from where we lived and, as I had been in and out of hospital for long periods of time, my parents wanted me to live at home.

So I started at the local infant school instead. My parents explained to the staff about my condition and my deafness, and they asked that I be placed at the front on the class to help me to understand what was being said.

It was not long before I realised, I was different from everyone else. Children started to stare and mimic my facial expressions. Some would ask questions, some would just say, “You have a funny face.” Some would just laugh. My mum always told me to say that ‘‘I was born this way,” but I was a very shy girl, so I would just turn away and say nothing.

Children soon started to call me names, which did take a toll on me. I felt hurt, embarrassed, shy, and I resented the way I looked.  All I wanted was to be ‘normal’ and fit in.

I was lucky to make some true friends who always reassured me that those children were bullies and to ignore them. These feelings of hurt carried on for many years throughout my school life, I just learned to live with them better.

A photo of a teenage girl with brown hair.Thankfully, my friends always made me feel good about myself and I enjoyed their company. As time went on, I began to feel stronger, a little more confident in myself, and I focused on my schoolwork and ignored the bullies.

As my confidence grew, I became more outgoing, and I started to develop ways to cope with people’s comments and stares. Sometimes, I would explain to people why I looked different, which I felt helped them to understand what life is like for someone with a visible difference. If people stared at me, I would smile back at them and this would often break the stare.

I was extremely blessed to have a wonderful and loving family who fully supported me every step of the way too.

A few years ago, a medical photographer (who I regularly met at my hospital appointments) suggested that I tell my story to help others who may have faced similar challenges to me. I had never thought about telling my story before as my childhood was so difficult.

As the years had gone by, I never felt the urge to revisit my past. But a seed had been planted that I couldn’t ignore, and I decided to do it.

The thought of writing my life story seemed quite surreal. I must confess that I am not a great reader myself and the idea of putting a biography together was very daunting. I spent many evenings in my room, going through the events of my life and typing up notes.

Writing about my childhood made me realise how strong I have become, and how having a visible difference has really made me the person I am today.

I felt immensely proud to finish my book and have it published. I hope that my memoir will help others facing similar challenges. I believe there is nothing wrong with trying to make yourself feel better, whether it be with make-up, clothes, hair.

But the most important thing is to be kind to yourself. Beauty is within, and people will see that if you let them. Be happy, smile and never let anything hold you back. But most of all, be you.

If you need advice, information, or just to talk about an appearance-related challenge you’re facing, our Support and Information line is here for anyone with a visible difference and their families. Call us 10am-4pm Monday to Friday on 0300 012 0275 or learn more about how we can support you here.

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