Emily developed facial palsy after having an operation to remove a dermoid (benign) cyst. Now aged 28, Emily describes the unpleasant experiences she faced before receiving the appropriate support.
I was aged 4, when a dermoid (benign) cyst grew behind my ear, which kept on growing and needed to be removed – the risk was that it might otherwise get infected and could burst, leaving scarring across my face. The surgeon who removed it sadly made the incision in the wrong place, and with the poor visual (that she would have had as a result) she severed the facial nerve and paralysed the left side of my face. I later found that she not only severed, but actually removed a section of nerve, with the cyst.
I was transferred to another hospital to undergo a nerve graft, which (after recovery) allowed me a very small amount of movement, and meant I no longer dribbled and could move the left eyelid a little.
As soon as I returned to school, I was bullied by older boys, and my mum and dad had to move me to a smaller school, which my mum knew well and had previously taught at. I was more protected there and got on well.
As I grew older, I became increasingly aware and unhappy about the way I looked. I remember being about 9 years old; the most popular playground game was kiss chase. The boys steered well clear of the girl with the wonky face though. I would avoid smiling as that would draw attention to the asymmetry of my face, and was subsequently accused of being moody – a million miles away from the animated, chatty and confident girl I had been at the age of 4, before my surgery.
When I was 12, my mum found a lady in Kensington who specialised in facial exercises, and had used them to overcome paralysis in her own face following dental surgery, and I went to her every couple of weeks for perhaps a year, to try and increase the strength and movement in my paralysed face. There was a little improvement, but it felt minimal and was tough work for what felt like nominal results.
As teenage angst took hold, I couldn’t see my face as anything but ugly and twisted. I became increasingly depressed and eventually got to a point where I would pretend to be ill or busy rather than go out with my friends at the weekend – I couldn’t face the idea of being stared at. I became increasingly angry about what had happened and didn’t know how to deal with it. Without anyone to be angry with, I directed the anger inwards, at myself.
I remember thinking that I would never fit in. That no one would love someone as ugly as I was. I could never do the things I wanted to do, or be the person I wanted to be, looking the way that I did. I was distraught, and would claw at my face in the mirror, in despair.
Finally, after some unpleasant experiences having to meet psychologists and go through tests, I was diagnosed as depressed, and sent for cognitive behavioural therapy at a hospital in London. I was given a fantastic psychologist called Alice. I began to learn how to spot the beginning of a potential downward spiral of mood, and also to re-frame the way I thought about myself and the way that I looked. I still think of that psychologist often, and wish I could find her to tell her how she turned my life around. I genuinely believe that, without her, I wouldn’t still be here today – my self-hate was consuming me and I wouldn’t have lasted much longer.
Soon after, I was referred for a cross-facial nerve graft, with a reconstructive surgeon who specialised in nerve damage and facial paralysis.
In the first op (of two), the surgeon took nerve from my leg, and used it to link the “good” working side of my face, to the “bad” side that didn’t work. Six months later, muscle was taken from under my arm and put into my face – after 11 years of barely any movement, the facial muscles I had had, were wasted away.
After the surgery settled, and the swelling had gone down, I had a little more movement in my face.
With the combination of the surgery, a new school start (I moved during the middle of high-school – I needed to leave the dark times behind me), and then, eventually, the surgery, I grew in confidence.
I did well at my new school, acting as Head of House, taking part in music and acting competitions, and even being in a play we took to the Edinburgh Fringe, which won 5-star reviews. At 18 I started working in a pub, and met my first boyfriend. At uni, I became involved in running the bar and – through this – was meeting and talking to new people all the time. I loved it, but was still surprised when I got male attention. I even ran Freshers’ Week in my final year, and had to get up in front of hundreds of people to talk. I was terrified.
Now, six years after graduating I live with my boyfriend in west London, and fundraise major gifts for a national charity and love meeting people. I still have to fight the urge to hide my face behind my long hair. I still have bad days. I get upset when I don’t have control over which side of my face is captured in a photograph (weddings are a nightmare, with the roaming photographers!), or someone looks at me in a mirror, which always seems to accentuate the asymmetry. But, I try to keep things in perspective, and face things head-on that make me feel uncomfortable. I still use my CBT techniques (although not consciously) and am extremely lucky to have a fantastic family, brilliant friends, and a lovely boyfriend to keep me happy and level-headed. By and large though, I am extremely positive about life and feel good about myself.
I wish I could have told my 14 year old self that it would be okay – better than okay! I get so upset thinking that other people feel the way I did then, today. It was miserable, and I wouldn’t wish it on anyone. When you’re that low, you need help. You need support. You need to know that facial paralysis shouldn’t stop you from doing anything in life, and that asymmetrical can be gorgeous too.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 22-10-2016 || Next review due: 22-10-2018