Bell's palsy: Your stories of living with half a smile

Debbie Johnston - whilst suffering from Bell's palsy, and having recovered Debbie Johnston, pictured left at her son's christening, has since recovered

BBC correspondent John Sudworth's story about the day he woke up with half his face paralysed triggered a big response from our readers. Many fellow sufferers of Bell's palsy wrote in to share their stories.

Debbie Johnston, Newtownards, N Ireland Six days after giving birth to my son, I developed Bell's palsy. I had to tape my eye down at nights for four months and drink through a straw for the same amount of time. At this time I also owned a bridal store and had to return to work and with my face so disfigured I found it all very difficult and felt I had to explain to each customer what was wrong with my face. My face is about 90% recovered and most people don't seem to notice it - or are too polite to mention - but I know it's still there! Doctors said the condition was directly linked to my pregnancy. I still have a wonky smile, I can't raise my right eyebrow and when I smile my right eyelid lowers and when I close my right eye it pulls the right side of my mouth. Naturally I was initially upset and I allowed myself one day of feeling rather sorry for myself before realising that I had the most amazing gift that I had to be thankful for, my son. And at that stage I decided I just had to get on with things and enjoy having this gorgeous little boy to lift my spirits (even with the sleepless nights).

Becky Pearson, Rainham, UK My husband developed Bell's palsy the day of our wedding, although it only become completely obvious two days later. It means our wedding photos show him looking slightly manic on one side. He scared a photographer on our honeymoon when he attempted to smile and so the remainder of our honeymoon photos show him simply not smiling. Not the best expression when you've just been married. Luckily his only lasted about a month but unfortunately, rather bad timing.

The day half my face went on strike

Screen grab from previous story

I've been touched by the huge response there's been to my article. In addition to the comments sent to the website many people have taken the trouble to email me directly.

A fair few recommend acupuncture. Some suggest facial massage although there is an opposing camp that warns against the practice. One email implores me to steer clear of cold drinks. All are offered in good faith and I'm extremely grateful.

Of course, most people recover over time anyway, and the sad truth is that there is little hard research into what really makes a difference. There is seemingly good evidence that an early course of steroids helps, but beyond that, not much else.

In the meantime I've begun acupuncture. So far, currently just beyond the three-week mark, there have been a few small signs of improvement. As with all these things, hope itself is important and thanks to the stories sent from fellow sufferers, I now have that in abundance.

Laura Rizzo, Houston, US I've had Bell's palsy since 2007. I am 70% better but still can not smile or control my right eyebrow completely. I woke up on 1 October with my half my face completely crooked, it was horrible. I fell into a deep depression and stayed hidden for months - every day I hoped I would wake up and my face would be back to normal. I miss my old face but most of all, I miss my smile. But I now know I am not alone and hope that whoever goes through this horrible experience knows that.

Clare Cryne, Manchester, UK I have suffered from Bell's palsy since 1990. There has been little recovery. I am a teacher and have to face pupils all day - not an easy thing to do but as a single parent had to keep on working. I know only too well the anxiety felt at any occasion when photographs are taken. Memories of weddings, family birthdays, days out etc - all become somehow tainted when you see yourself as others see you on a daily basis. Unfortunately for Bell's palsy sufferers the social networking sites, skype and mobile phones which take instant pictures can destroy any happy event as pictures are passed around and once again your distorted facial image is plain for all to see. More importantly it is clear for you to see. I have recently had a fat transfer - taking fat from my stomach and inserting in into my face in an attempt to prevent the face collapsing. This was successful and has boosted my confidence.

Mark Burdass, Uckfield, East Sussex I am a primary school teacher and have had Bell's palsy for the last three weeks. Yesterday the corner of my mouth moved for the first time in weeks and I can't tell you the relief I felt! It is not just the looking like a Bond villain. There are so many things that you take for granted that happen to you when you have Bell's: you can't drink without it spilling down your shirt (you learn to carry a drinking straw with you everywhere); going out in the sun is problematic as your eyes don't squint; you have to tape your eye shut at night (otherwise you wake with it dry and painful - this is apparently a serious danger of the condition); and the irritation of biting your own lips when you eat.

Sarah Rawlins over period of three weeks Sarah Rawlins tracked her recovery by taking a photograph of herself every day

Sarah Rawlins, Whiteley, UK I felt my face changing before others noticed. My jaw felt out of line and I was suffering from a horrible ear/neck ache. It was totally unexpected and had a huge impact on my confidence. The doctor quickly put me on steroids and anti-virals and told to keep warm and totally rest. It was about three weeks before I saw any improvement and had actually taken to taking photos of myself everyday to view progress.

Sarah Rawlins Rawlins now

During recovery my face felt as if it has spiders crawling over it and tingled on a regular basis. Little did I know that that was my first signs of recovery. I grew to hate straws (only way I could drink) and the lack of sleep was challenging. I also had hearing problems and all sounds were tinny and annoying. The hearing was one of the first things to recover. I had been told by my doctor to keep the affected side of my face warm and not to over-exercise it. I did have physiotherapy which I think really helped. I'm recovered now. Although I do have a tendency to open one of my eyes when I yawn, no-one would ever know.

Sim LeCompte, Minneapolis, US I had Bell's palsy when I was 12. I was watching a funny cartoon and laughing when I realised my mouth felt weird when I smiled. So I looked in the mirror and saw that the right side of my face was completely functionless. It took exactly a month to heal, and as a 12-year-old, I was enjoying myself a lot. I kept looking in the mirror and making funny faces and laughing, and every time I drank something it would drip from one side of my mouth, which also made me laugh. And I got to rest at home for a whole month, not going to school. My parents were freaking out while I was enjoying myself.

Start Quote

When eating something nice, instead of salivating, a tear will run from my left eye”

End Quote Simon Wild

Simon Wild, Derby, UK 30 November 2009 - a date I will never forget. Awoke to an early alarm call and, half-asleep, sloped into the bathroom for a shower, then to clean my teeth. On doing the latter, something seemed strange. On rinsing my mouth I couldn't spit into the basin. I looked at the mirror and there it was - the face! Half fine, half not. I went to my wife who confirmed that this was not right and off to hospital I went. First tests for stroke but nothing else on my left side was affected. I braved work and endured the stares, the comments and ribbing from my closest friends. Initially I had to tape my eye shut at night. In the day, my eye would be sore, as it couldn't blink. Over the last three years, the issue has never gone away, though it has improved. Most new people I meet do not realise. I am also less self-conscious and have adapted my smiling technique. Quirks include, when eating something nice, instead of salivating, a tear will run from my left eye. Great at dinner parties!

Llewellyn St David "I thought it would be the end of my career"

Llewellyn St David, London, UK I suffered an attack of Bell's palsy after a motorcycle accident, and as I'm sure other sufferers will testify, the initial reaction is one of absolute horror. I felt disfigured, a freak, and couldn't bear the thought of my young god-daughter being faced by this "monster". I was also an actor at the time, and thought it would be the end of my career. Thankfully, the reality was that people barely noticed. I think we're hyper-sensitive about anything relating to our faces. We've all had spots and feel that they're enormous glowing pustules flashing our hideousness like belisha beacons, when they are actually very minor blemishes that largely go unnoticed. Thankfully the condition lasted no more than three months, but it taught me a very valuable lesson - how you think you look to other people and what other people see are two very different things.

Steve Fleming, Hull, UK Bell's is only one type of this form of facial palsy. There's a congenital type that happens when the facial nerve doesn't form and the palsy is total. This is what I have, with a similar effect to John's condition. I was born with it - I'm now 56. It does colour your life to some extent. I had a lot of speech therapy when I was young, you feel very socially awkward, especially, but not only, in your teenage years (although some girls seemed to think you needed looking after). It's an opportunity for bullying (all right, I was a swot too). I can't play the trumpet, although I can't say that's a big loss. I've got a beard which is a mild case of covering up, and you have nagging worries - will the face give up the ghost and sag in a melting-ice-cream sort of way? It hasn't, even though I was told it would and that I would have to plastic surgery to pin it all back up. But on the other hand, it's not terminal and I managed to go to university, get married and have four kids along the way.

More on This Story

In today's Magazine

The BBC is not responsible for the content of external Internet sites

Features

BBC © 2014 The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.