Bethan’s Story

Before facial palsyHi my name is Bethan; a cruel twist when you can’t pronounce the letter ‘B’. This letter, along with ‘P’ and ‘M’, are difficult for me to say. My speech is often compromised and people do not understand what I am trying to say. Telephone conversations are scary and can get a little interesting sometimes! In the past, I have had to resort to saying ‘the second letter in the alphabet’.

In 2008 when I was 22 and training to be a veterinary nurse, I had a nasty car accident which left me with bilateral facial palsy. This is when both sides of the face are paralysed. The impact of the accident fractured my skull in four places. After 13 days in a coma, I woke up a different person. I couldn’t walk, talk, eat or understand what was going on around me. I was like a small child and had to learn how to perform all the basic functions again.

Beth after facial palsy in hospitalI was told my facial palsy is due to both of my facial nerves being crushed by the fractures to the petrous bones deep inside my head and the swelling afterwards. It is very rare and there wasn’t any support at the time. I was always told I was lucky to be alive, let alone walking and talking. Honestly, I didn’t feel very lucky…

After spending two months in hospital and a further month in a brain rehabilitation unit, I was sent home. My facial palsy wasn’t taken seriously and everyone presumed I would recover within the first year. I was discharged with no further treatment.

Blowing candles out with facial palsyMy first birthday party after returning home from hospital was interesting but heart-breaking. Friends and family turned up to celebrate and my sister made me a lovely cake. I hadn’t realised that blowing out the candles would be impossible. My big brother was on hand to help though. This same mouth action is also used to whistle, blow up a balloon, and even spit something out if you need to. These are just some of the small but simple things I can’t do. I have looked back at my photos to find some I would like to share. I feel heartbroken because all I see is a damaged face. Friends can be as kind as they like by saying ‘It’s a lovely photo’ or ‘It’s not as bad as you think’. But these photos show me that I have lost out on so much. Facial palsy is cruel and very isolating!

It took eight months for me to see a neurologist, who told me I needed to wait and see which nerves would recover before any further treatment could be tried. When I look back now, ten years later, I still don’t understand how someone with a brain injury and an obvious facial problem could have been left so undiagnosed. My eyes were damaged, and speaking, eating, drinking and expressing my emotions were impossible. I didn’t get the right support, treatment or advice!

I find it hard to be around small children as they rely on happy faces to feel at ease. I prefer to hide away or distance myself. I wonder if my own child (should I have one) would be confused and get upset because I look miserable or can’t show them a big cheesy grin.

Years later I was desperate to find someone who could help me. Whilst visiting family in Australia two years after the accident I saw a specialist doctor who told me that some nerve intervention should have been done the year before and that time was of the essence. I came back to the UK to see his colleague but unfortunately this doctor would not perform the necessary operation because he said that it was now too late. I felt let down and angry. This operation could have changed my life but I didn’t know about it until it was too late!

My whole journey in relation to the NHS has been a difficult one. I have had to do my own research and ask my GP to refer me to specialists who might be able to help me. When I lived at home in Wales I had to travel to England to see specialists and the funding had to get approved by the Welsh Health Board. This process was stressful and extremely upsetting.

Travelling on public transport can be very daunting; people naturally look around and when you are the strange looking person you get stared at. People in the past have been very rude and said things like ‘Whats wrong with your face?’

Three years after my crash I finally had an operation called the Labbé technique, this was carried out by a surgeon in the south of England. This is a dynamic facial reanimation operation pioneered by the French surgeon Dr Daniel Labbé. It aims to improve facial symmetry, both at rest and when you’re smiling. It involves transferring and lengthening the temple muscle on the side of the head– a muscle that usually helps to moves the jawbone.

After surgeryIn the last eight years I have had around 20 operations, which are ongoing; this is to adjust the length of the nerves that hold my mouth up. Each time it has hugely improved the appearance of my whole face… Now ten years after my crash I wonder if I’ll ever be happy with the person I’m stuck with, or still grieve for the person I used to be but also the dreams that I planned out. My accident has not only changed my life physically but also mentally and emotionally. I still suffer from continuing depression. Having facial palsy has seriously inhibited my rehabilitation.

Some things I do still struggle with include:

  • Speech
  • Eating
  • Drinking
  • Smiling and other facial expressions

My eyes are affected as my blink reflex and tear ducts do not work. When I am tired I notice my face dropping and feeling heavier. My recovery is a long and slow one. Not only have I had to come to terms with having acquired bilateral facial paralysis, but I have also been recovering from a severe brain injury. Being treated by my surgeons is gradually changing my life. I have become more confident.

Before that day I was a fun, outgoing/confident person. I felt happy within myself and my appearance. I loved to travel to Sydney, Australia. I wouldn’t think twice at trying new things (popping to the pub or having a romantic relationship.) These days I prefer to hide away as I am paranoid about people seeing my face and reacting in a negative way. People must think I’m a miserable person walking along but no I’m just locked in by my frozen face!

Life is very cruel sometimes! I’m still a young lady who wants to smile and feel accepted. Please don’t be rude, its not my fault I look like this.

With the Facial Palsy UK teamAfter having surgery and other therapies, I can feel myself gaining some of my old confidence back. Being treated by my surgeons has and is gradually changing my life. It has in many ways given me a big portion of my life back but it is cruel to think how much easier the journey could have been and how much better my recovery might have been, had I received the care and advice I needed in those first few years.

Bethan with dogsFacial Palsy UK helps to raise awareness as well as give support and crucial information to those who need it. If the charity had existed when I had my accident, I may have had a more positive recovery story to tell. More than anything, working with Facial Palsy UK has brought me a huge sense of purpose, value and acceptance. I now know how to reach out to people, be more open about everything I have gone through, and not always feel like it’s something to hide. Telling my story and showing my face is a positive thing that can have a deep and lasting impact on other people’s lives.

Over the last 10 years I have realised that it is important to fill up my time with positive things. I now live in Bristol now with my two dogs, Darcy and Noah. They are a great distraction for me. I’m pretty sure they don’t notice my funny face and love me for me! They have also been a useful tool to get me out of the house and socialising. I have met some new people whilst out walking, some that I would class as lifelong friends now.

About Bethan’s volunteering for Facial Palsy UK

Points of Light Award

Points of Light Award

Bethan has been volunteering for Facial Palsy UK since its inception in 2012. Her activities include offering support, raising awareness, helping at family days and fundraising. She has to carefully plan her activities as she struggles with the brain injury which was a bi-product of the road traffic accident and she can soon become over-tired. In between activities Bethan has had repeated surgeries to help with ongoing issues caused by the facial palsy. She also suffers from migraines. Bethan is supported by her family with many of her activities.

Raising awareness

Bethan has raised much needed awareness in the following ways:

  • 16 November 2012: Bethan spoke at the charity’s official launch. See video below.

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