Claire’s Story

A student at the University of Portsmouth, Claire has had facial palsy from birth. She describes her struggle with bullies, friendships and surgery.

Claire while at university - credit Jack Lewis

Claire while at university – Photo credit: Jack Lewis

As I was growing up, I was aware I looked different to the other kids at school. I couldn’t always do what they did: blowing bubbles at break time, playing the recorder in class… I even had trouble sounding out words. I wanted to blend into the crowd, but my condition made me stand out like a sore thumb.

When I was three, I had surgery to improve the symmetry and function of my face. My parents chose for me to have the operation when I was young, so I wouldn’t remember the traumatic experience, or grow up with the condition. The procedure involved removing a muscle underneath my armpit, which was then placed in my left check, with the nerves attached to the top of my lip.

I remember the surgeon; he used to call me ‘Claire Bear’. I felt scared of him even though my parents assure me that he was really nice. When we got to the ward, the sister came around with Minnie Mouse and gave it the anaesthetic to demonstrate what they would do to me later. Mum was crying. I didn’t want to lie on the table, I was screaming. I remember the mask over my mouth. The whole thing took nine hours; I had an infection, and I spent more than a week in intensive care.

Unfortunately the operation was not successful. I was given a TENS machine – TENS stands for transcutaneous electrical nerve stimulation. It produces electric current to stimulate the nerves in your face. I had to use it twice a day for an hour. It was horrible; it caused sharp pains in my face, and Mum had to fight me just to put it on.

Towards the end of Infant school, I used to put the machine on myself every night, on the highest setting. The pain didn’t matter anymore: my hunger to be normal would let me to do anything.

My sister and I sometimes made funny faces when messing about. My mum would tell us that if we pulled a funny face and the wind blew three times, then we would be stuck like that forever. I would hold my face in a symmetrical position and hope for the wind to blow three times…

In primary school I made a small group of friends and I felt happier, but I still remember an older boy bullying me: he would say horrible things and try to impersonate my face. I kept my head down, until one day I cracked and told my group of friends. They confronted the boy and gave him a taste of his own medicine – he never bullied me again! Why didn’t I tell the teachers, my parents, or even my friends sooner? The truth is that I felt embarrassed. If anyone mentioned my facial palsy, I would go bright red and feel uneasy. I didn’t want my parents to think I wasn’t coping.

At the age of nine, my doctor referred me to another surgeon who was operating on patients with facial palsy, but I felt uncomfortable about the whole thing. When my parents asked me if I wanted to have the operation, it felt like someone had kicked me in the throat; I started welling up and couldn’t speak. I decided not to have the operation: I simply wasn’t ready.

I was dreading secondary school. On the first day, when my best friend and I walked into the assembly hall, I remember people staring at me; it was one of those moments where you just want the ground to gobble you up. A few days later, we had our school photos taken. My mum had straightened my hair and reassured me that I looked nice. I sat down on the chair provided and pulled my best smile. Nothing could have prepared me for what happened next. The photographer asked, ‘Smile properly!’ I smiled again. She said, ‘Alright, pull that funny face then,’ and she took the picture. I felt crushed. I remember going to the toilets and crying for ages: it was the first time an adult had been horrible about my face.

Over the next few months I failed to make any friends – partly my own fault, as I said as little as possible to everyone. My best friend was confident and outgoing, and she soon had a close-knit group of friends. I hung around with them, but I felt invisible: no one really cared about me; I was never invited to anything. This made me sad and angry, I wanted to have a voice and be noticed. I blamed my facial palsy for everything. I hated my life, I hated going to school.

A group of boys started bullying me relentlessly. They would torment me with grimaces, in front of the whole class; no one wanted to be friends with the girl who was being bullied. This went on for months until I finally told my tutor, who advised me to ‘ignore it’. That put me off turning to teachers for help. I tried my best to do well; finally I moved to a higher set and didn’t see these boys so often.

In my new classes I was far happier; I stuck to myself and kept my head down. However, this didn’t stop others noticing me. In a French lesson, I was sat between two guys; they started singing a famous song by Guns and Roses, changing the chorus to, ‘Take me down to the paradise city where the grass is green and the girls are ugly,’ and pointing at me. They kept doing it every lesson. I coped by pretending to ignore it; I wasn’t really that strong, but I didn’t have anyone to talk to.

In Year 10 the classes were shuffled again. I made a new friend and we soon became close. She introduced me to her group of friends, and for the first time in my life I felt I really fitted in: they cared about me and what I had to say. I was no longer invisible. I was invited to everything. With my new happiness, I flourished; I smashed my predicted GCSE grades and got into a really good college.

Around that time I started having huge self-esteem issues. I desperately needed to be ‘normal’ and ‘pretty’. I wondered if I would ever get a boyfriend. Mum found an article in a local newspaper about a surgeon who specialised in my condition. Our first appointment with this surgeon was amazing; to think someone could actually help me made me feel on top of the world.

My first operation was in February 2009: it was a small operation on my eye. A gold weight was inserted into my upper eyelid, and the corner of my eye was stitched up.

The following summer, I went back to hospital for a Labbé procedure. This operation aims to improve facial symmetry, both at rest and when smiling, by lengthening and transferring a muscle that usually moves the jawbone. It was a success: although my jaw function was slightly sacrificed, my facial symmetry greatly improved, and now I can smile when I clench my teeth. The whole process was hard and very painful, but for the first time I was happy with the way I looked.

As I went to college, I was confident with my new face. I wasn’t bullied; however I faced other challenges with my confidence and self-esteem.

Despite all these trials I achieved good A-levels. Starting university was amazing. I made lots of new friends and no one judged me on the way I looked.

I wouldn’t be who I am today without facial palsy and the challenges it created, all of which have made me stronger person, with great determination and ambition.

Of course I still have to overcome daily challenges, and I worry about the future. I still hate it when people stare at me; I don’t like taking public transport, shopping on my own, or meeting new groups of people. I’m worried that the way I look will hinder my job prospects. (I’d love to work in marketing.) And when I have a family of my own, I wonder what I will tell my children when they ask what’s wrong with my face – will they be picked on because of me?

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Last reviewed: 22-10-2016    ||    Next review due: 22-10-2018