Thirty-three year old Craig describes the day he developed Bell’s palsy as ‘the day I died’. His diagnosis led him down a path which could have destroyed him if not for the support of an understanding GP and his employer. Although struggling with feelings of loss of identity, along with losing his smile, Craig now believes he is a better person through getting Bell’s palsy. He has decided to help others as it helps him to feel better about himself and the condition. Here Craig tells his story.
On the 1st December 2014 I went into work as normal but I wasn’t feeling particularly well, I had a splitting headache and took some tablets. I work as an administrator for Virgin Media and I’m not one to take time off sick. When I got home that evening I remember I had a metallic taste in my mouth and I thought something’s not right here, but I decided to just go to bed and sleep it off.
The next morning I started using mouthwash but it was just coming out all over the side of my mouth. I thought it was a bit odd but my headache had gone so I went into work not thinking any more of it. One of my colleagues said “Look at your face, have you had a stroke?” I said no and started to drink a glass of water, but that also started spilling out all over. She said “Craig you need to get yourself off to A&E, it looks like you’ve had a stroke.” I reluctantly went off to the Walk-in centre where two doctors saw me straight away and I was told it was probably Bell’s palsy. I’d never heard of it. I was given steroids and some information about eye care, and told to rest up. They said it should be gone in a couple of weeks. I didn’t know what to expect.
When I got home I didn’t eat properly because I couldn’t taste anything that I was cooking. Very quickly I didn’t want to go anywhere, I became more or less a recluse overnight. I had been looking forward to Christmas and all of a sudden that changed. I was signed off work by my own doctor the next day; I never have time off sick so my work colleagues were worried. My GP also said in a couple of weeks I would be back to normal, he’s really supportive but I have since come to realise that there is very little known about Bell’s palsy and not much that health professionals can really tell you about your likely recovery. I just stopped in bed and watched television for that first two weeks. When I did have to go somewhere I would wear a hat with a scarf wrapped round covering as much of my face as possible. I took hankies with me to mop up when I started dribbling in those early days and for two months I was drinking through a straw. If I tried to eat an apple I would end up eating half my lip. I just wanted to be left alone. I felt I’d rather not show my face again.
Just after Christmas I went back to the doctors to see if I could get signed off again but he felt it would be better for me to go back to work. I had had four weeks off in total because of the Christmas break. My employer’s occupational therapist phoned me to assess what I could do when I returned. I explained I just wanted to get my smile back, which is I guess what everyone with Bell’s palsy wants. One of the things the occupational therapist asked was whether I had ever considered counselling. My first reaction was “What do I need counselling for?” She gave me the number for counselling and said if I changed my mind to give them a call.
The uncertainty gets you I suppose. Everyone keeps telling you that you are going to get better but then you look online and you realise that some people never recover from it. No one in the medical profession can give you a definite answer. I’d rather someone told me “Craig, no you’re probably never going to get better” rather than not knowing.
I was a wreck when the time came to go back to work and I was close to tears because I didn’t want people to see me the way I was. I didn’t like looking in the mirror and I didn’t want people to see what I saw. I wanted to be swallowed up and not be seen again. When I did cry I found only the left hand side of my face had tears streaming down it. The right hand side had no tears whatsoever.
It turned out to be a good decision to go back to work though. Being back part-time gave me a bit of focus rather than sitting in the house feeling sorry for myself and becoming a recluse. I had to get up in the morning and I had to go to work. My work colleagues were all really nice, even people I don’t speak to as much normally; everyone was so supportive and said ‘welcome back’. Then people were saying “We know someone who’s had it and you’ll be fine in a couple of weeks”. The partner of one of the girls I worked with got Bell’s palsy the same time as me although fortunately for him he recovered in four weeks. It helped because it made me feel well maybe I can recover. It was very emotional going back to work.
In the first couple of months I had problems with my speech. When I had to occasionally take calls at work it sounded like I had been to the dentist and some people did have trouble understanding what I was saying. I had to talk very slowly and be very clear. Luckily that has now mostly cleared up although every now and again I do slur a bit, when I’m a bit tired or run down it comes back.
I also decided to have the counselling, it was a massive help just having someone to actually speak to. Looking back, even after all the treatment: acupuncture, physiotherapy and botox, for me counselling was the biggest help.
Although I don’t mind going to work now, it’s difficult if I go out in town or somewhere new, I’ve always got in the back of my mind that people are looking at me. When I’m at work I’m happy because people don’t look and stare, but when I’m out and about I’m a different person. I’ve always described the 2nd December 2014 as the day I died. That may seem a bit harsh but I am no longer the same person as I once was. Someone who has never been in this situation won’t understand but a lot of people who I have spoken to who have had Bell’s palsy can completely relate to it. It’s a loss of identity.
The first physiotherapist I saw was in Rotherham but I’m now seeing a new physiotherapist in Sheffield who more or less said the physiotherapy I was having before was completely wrong. It was difficult having one physiotherapist telling me this is the correct course of treatment and then another telling me that was wrong. The medical profession needs educating more about it.
My right eye was constantly blinking and my left eye wasn’t so I was wary even if I went in a supermarket that I would look like I was winking at every passer-by. I had acupuncture and after a few weeks my eye seemed to improve. After a month or so I no longer had to tape my eye shut at night. Being able to close my eye at night was one of the first improvements I had. One day I was crying about something and it really lifted me up a bit because all of a sudden, for the first time in months I had tears running down both sides of my face. I was initially thinking yes I am starting to get better but since then my improvement has plateaued.
When I eat now my eye waters. I’ve tried to see if it’s particular things that trigger it, if it’s something hot or spicy, or if it’s a time of day, but I can’t put it down to anything. One of the exercises the new physiotherapist wants me to do is to look in a mirror and try to swallow and keep my eye open which sounds fairly straightforward but I can only do this sometimes because it tends to just shut automatically. The first physio never even discussed doing this kind of exercise and they had very different ideas. I’ve just started having botox as well but I’ve not had a very high dose and at the moment I can’t see any improvement. My eye closes when I try and smile.
I go out nowhere near as much as I did before. The psychological side of it seems to far outweigh the physical side of it. I could get away quite happily with my eye tearing every time I eat. Last year I ventured out maybe five times for a night out. The only time I was regularly going out was to work. Your confidence is knocked. I’m not in a relationship and for me to try and date now is even harder, where I used to once win people over with a cheeky smile now my immediate reaction is that someone’s thinking ‘well what’s wrong, why’s he not smiling?’
My GP has been absolutely brilliant. He didn’t know much about it or claim to know much about it, but if ever I have been to him about treatments I have found out about, he has been more than willing to get me referred.
There are some illnesses or disabilities where someone looks different but you know what is likely to be wrong with that person because the condition is more well known. When I was in town one night, a woman I was walking past told me to “Cheer up, you miserable $!$!$!” and I said “Well I can’t, I’ve got Bell’s palsy.” She did later come over to apologise though but it just goes to show so little is known about it.
I am happy at work though because people don’t look, people don’t talk. They just think it’s Craig and they don’t think any more of it. Maybe if people did know a bit more about it, it wouldn’t be so bad. I’m slowly coming to terms with the fact that maybe I’ll never smile again but I can’t go on hiding, I’ve just got to get on with my life. Got to carry on, got to go away on holidays, I can’t just go to work and nothing else. My social life is not what it used to be, will it ever be I don’t know? But I’m slowly now getting out of the house. If I do go out to the pub I will find somewhere quiet, somewhere out of the way where I’m not surrounded by a lot of people.
When people say they can’t notice, you don’t know whether they are saying that to be kind. My therapist asked me “How do you feel about how you look now?” and I said “Well people say it’s got a lot better.” But then she said “No that’s not what I’ve asked you, I’ve asked how do YOU feel?” I realised I was basing my feelings around what other people said.
When I was first diagnosed I thought I was the only one because I’d never heard of it but with social media you very quickly realise you are not the only one and there’s people all over the world with Bell’s palsy.
I was referred to a neurologist about six months after I initially got Bell’s palsy to check if there was any reason why I wasn’t recovering, and I also had an MRI. Out of all the medical professionals I had seen this was the worst appointment I had. She more or less said I see women with this all the time and they recover, what seems to be the problem? I came out of there close to tears. I had hoped a neurologist would be the person who could look into things more completely but she was no help whatsoever. The MRI didn’t show any reason for the Bell’s palsy not going away. I also had an EMG, where they put needles in your face to track the activity of the nerve. It didn’t give me any further information really.
The lasting physical effect I live with is being unable to smile. I’d like to be able to say thank you to a girl on the checkout and be able to smile. The day my niece was born I would have loved to hold her in my arms and smile at her. Also my brother will be getting married next year, I won’t want to be in any photos as I am unable to smile. We don’t realise what it’s like not living with a smile, everyone takes it for granted. You wake up one day and it’s gone.
I tried going on antidepressants but I couldn’t sleep on them so stopped taking them. What I found really helped was helping others on social media with Bell’s palsy. I did get to one point where I didn’t want to wake up anymore and would rather not exist, even the counsellor was worried about me and wanted me to have more sessions. All of a sudden though I managed to pull myself out of it and carry on.
It has probably made me a better person actually getting Bell’s palsy. Going through it I have turned into a more kind and considerate person. I have met lots of people through social media and we all try to help each other. Even this Christmas I donated to the charity rather than give presents to friends and family. The one thing I want more than anything else in my life is to be able to smile. No one can give me that for Christmas so I decided to try to help others instead. I’ve found helping others makes me feel better about myself. I was interviewed for a video last year which was put together by a university student who has also had Bell’s palsy and it made me feel better, even if just one person watches that and gets a bit more confidence and realises there are other people out there then I’m helping others.
Craig took part in a film made by then Sheffield University student Junn Loh in Spring 2015.
Last reviewed: 09-02-2016 || Next review due: 09-02-2018