Hannah describes her struggle to find the help she desperately needed, after her Bell’s palsy diagnosis.
There are key moments in our lives which define us. Times when we need to find an inner strength like no other. Times which can either make us, or break us. Coming to terms with facial paralysis was one of those moments for me…
With very little warning – just a very painful earache the day before, I woke up one November morning with half a face; one half was totally immobile.
After an initial panic that I was having a stroke (I had no idea what else it could have been) I was diagnosed with Bell’s palsy. I had no idea what this was.
Initially I saw the funny side. It was fascinating really, my face looked like a reflection in a distorted circus mirror. I remember joking about it, saying I looked like a gargoyle. But then there was the pain. My neck, chin, ear and cheeks felt bruised and ached continuously and my left eye, which wouldn’t shut at all independently was becoming more and more irritated.
Ear, Nose and Throat, and Ophthalmology saw me regularly but only seemed able to confirm the same thing – it’s Bell’s palsy. I was offered no real advice other than to rest and was signed off work. I became increasingly frustrated and saw no improvement. It wasn’t so funny anymore.
If anything, my appearance had deteriorated and the ‘good’ side was now becoming uncomfortable too. I didn’t want to go out or see people because I was so conscious of the way I looked. The pain and discomfort was constantly draining and I was annoyed I wasn’t at work.
A friend had pointed me in the direction of the Facial Palsy UK website so I decided to make contact. I can’t tell you how reassuring it was to talk to someone who knew what I was experiencing! I was signposted to some NHS facial palsy specialists and I decided to make a private appointment with one of these specialists. It was miles away but I was desperate to see someone who could help.
By now it had been almost three months. I was trying to get back to my work as a Primary School Teacher but felt pretty down. Anxiety had also kicked in, especially when I needed to face people for the first time. However with the support of colleagues and a class of amazing 7 and 8 year old children, I was able to return to work, if at first gradually. A child in my class compared my face to ‘Olaf when he melts by the fire in Frozen’ – a pretty good analogy really! And another wanted to know why it was ‘Bell’s palsy’ if it didn’t have anything to do with bells!
I can’t explain enough how those 7 and 8 year olds helped me back to reality. They asked questions without judgement and accepted my lack of expression by using hand signals, like thumbs up when we were happy! My own children too played a massive part in lifting my spirits. You can’t stay down when your children need you – I was desperate not to let them see me struggle.
However, the lack of improvements were still frustrating. It wasn’t until I saw the specialist physiotherapist for the first time that I felt like there really was an actual light at the end of the tunnel. I had to pay for the appointment and make an hour and half journey to get there, but it was so worth it.
I was given advice and reassured that I wasn’t the only one who had ever experienced this. If only I’d been able to get here on the NHS…
To cut a very long story short, we tried really hard to get an NHS referral to the specialist clinic, but it was refused. I could have given up, but after exploring a range of avenues – neurology, maxillofacial, dentist, MRI scan etc., I was eventually referred – a year after initial diagnosis.
Now, as I continue to stretch and exercise my ‘concrete’ left cheek, I realise what a journey it’s been.
You probably wouldn’t know now… unless you knew of course! I sometimes still find photographs hard – a snapshot of a face that doesn’t work properly – but I’ve found ways to deal with it. My only real continued frustration about the whole experience is that it’s just so hard for people to be treated properly on the NHS.
Facial paralysis isn’t something you can cover up and hide and it’s frightening. Specialists helped me deal with physical and emotional effects, but only because I looked for the help and didn’t give up. Surely that’s not the way things should be?
So to end, I know that facial paralysis is still part of me, but it doesn’t define me. If anything, it’s strengthened me. Let’s talk about it, share our stories and raise awareness.
Hannah decided to share her story to help others affected by Bell’s palsy. In 2016 she was featured in Take a Break and Woman magazine as well as the Daily Mirror (link opens in new window).
Last reviewed: 22-10-2016 || Next review due: 22-10-2018