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What it is like having to cope with Bell's palsy

 

Battling on: Joanne Weir
Battling on: Joanne Weir
Joanne Weir with her god-daughter Rachel Darragh
Rachel Darragh

Actress Angelina Jolie recently revealed that she developed Bell’s palsy last year after separating from Brad Pitt. Linda Stewart speaks to two women from Northern Ireland about being diagnosed with this form of facial paralysis which can affect one in 60 people during their lifetime.

'It makes you very, very paranoid, it's your face and you can't hide it'

Civil servant Joanne Weir (43), who is single and lives in east Belfast, was diagnosed with Bell's palsy 12 years ago and is still affected by it. She says:

My Bell's palsy started off with a sore neck and it got increasingly bad overnight. I was in Enniskillen with a group of young people and my neck was so painful, so I ended up going to the Erne Hospital the following morning.

And before I even said 'It's my neck', the doctor said 'I can see something going on with your face' - he spotted it straight away and no one else had really noticed it, not even me. I was prescribed a steroid immediately.

The infection that led to that facial palsy was caused by a virus. The virus attacked the muscles in my face but it also affected my movement.

On the Monday I went to my own GP and I was referred to a physio because my movement was limited with the pain. It was not so much my face that was the priority - it was, do my limbs work?

Around 80% of people with Bell's palsy recover within three weeks so I kind of put the problem on the back burner. However, my facial muscles never recovered, so I have a permanent facial palsy.

I'd heard of Bell's palsy and I just assumed that it would get better and would go away. Consequently, I wasn't that worried about it to begin with. The assumption was that I was on the right medication and would recover.

Probably within a few weeks I got full movement in my upper body but I was undergoing fairly intensive physical therapy for that.

By that point I realised I was crossing the three-to-four week mark and my facial paralysis hadn't improved at all. I went back to the GP at that point. The GP referred me to ENT at the hospital and I was holding out for that as well.

At the start I was okay about it. But certainly after a few months I got very depressed about it.

There wasn't much practical help or indeed much psychiatric help and some people can be quite unsympathetic, like 'It's only your looks, get over it'.

One person told me just to grieve for my face and move on. When I asked for counselling, I was offered Prozac and told to try to come to terms with it.

It's really hard to tell how noticeable it is. Personally, I think it is very noticeable but lots of people tell me you can't really notice it. However, I think they tend to be the people who've only known me since I've had Bell's palsy or who know me well enough to have got used to it.

I'm quite lucky with my facial paralysis in that it's my forehead that doesn't move. I have full movement with my eye and that is very, very unusual. I can blink and I can wink.

Most people would have to tape an eye closed at night. One of the girls in my support group (organised by Facial Palsy UK) had to get a gold weight put in her eyelid to allow it to close, but my eye is fine which is a blessing.

Having a condition like Bell's palsy makes you very, very paranoid - it's your face and you can't hide it as a disfigurement. You have to meet people and you have to talk to people.

Sometimes even my facial paralysis takes me by surprise - I forget about it and then someone will take a photo.

Our group all say the same thing - we all have facial paralysis for different reasons, but we all have facial paralysis and none of our pathways have been similar. It's really frustrating.

I was referred to ENT, but my friend never even saw ENT and another girl saw a specialist ENT consultant, which I never had. The pathways aren't set out.

It might be about our faces but it's not about how we look, and the treatment comes down to what you can afford and what you cannot.

It's about how we feel. It's just happened to be how I look that causes how I feel about myself. We've all had very different routes to facial paralysis but we all suffer with these feelings.

Living in Northern Ireland, it is really difficult to get access to the same services as people in other areas of the UK.

There are pockets of the UK where people are getting really good follow-up care for facial palsy and then there are other places where there is nothing at all.

I would like to see reductions in this inconsistency of care."

‘Eating was not easy and brushing my teeth was also a struggle’

Rachael Darragh (17), from east Belfast, has three brothers and a niece and is Joanne's god-daughter. She was diagnosed with Bell's palsy earlier this year, but it has now resolved. She says:

I'm in tech, studying youth work, and I volunteer with Youth Initiative for 11-15 year-olds. It's a cross-community group.

I knew that Joanne had Bell's palsy, but I didn't know what it was or how it felt.

I had an infection in one side of my face. It was an infection under my tooth and it spread right up into my face. And when that went away, I started to feel a droopiness there and my face was quite tingly.

Whenever I was asleep, my eye wouldn't close properly - that's when I told my mum and we went to the doctor's. She checked me and pushed on my shoulders to make sure it wasn't a stroke.

She said, 'It really looks like Bell's palsy', and she printed off sheets and was going through it with me. She said Bell's palsy can be permanent or it can be temporary - it's a 50:50 chance really.

I was on steroids, on 10 a day for a week. There would be wee twitches and that would give me a bit of hope that it would go back to normal, but I also knew that it might not, so I didn't get my hopes up too much.

I was so scared. It really looked like one side of my face would not move at all. You could physically see it and you could physically feel it. My best friend noticed it, but she didn't say much. However, I was really self-conscious and my friend was really good with me - she would say, 'If anyone else stares, just walk away, they shouldn't be staring at you'. And, actually, there were no really negative comments about it.

I began to notice it changing probably about a month into it when I was going to sleep one night. I had to patch my eye at night, so that it was still moist. I took the patch off because I felt like it was closed and it was - my eye had closed itself. I could also move the side of my mouth - it was like a twitch, but it was moving.

It probably took two and a half to three months for me to fully recover. It took a long time, but it's back to normal now.

When I did have Bell's palsy, I would go from my house to my aunt's house or to see my best friend, and that was it. I didn't go to my volunteering for the whole three months - nor did I go to tech because I thought that people might say something to me. I'm back there now.

I always know that the Bell's palsy might come back, but I've had it once before, so now I know the changes I have to go through to deal with it - for example, eating wasn't easy. It sounds absolutely ridiculous, but I had to eat from my niece's spoon. I had to drink through a straw and push it to the back of my mouth, so that it would stay in. Brushing my teeth was a real struggle, too, because of the side of my mouth. Little things got difficult.

My advice to anyone with Bell's palsy would be, 'Don't dwell on the negative, but hope on the positive'. That was my saying the whole way through and I am fine now.

Joanne was a big part of my support. She would tell me every day, 'I have it for life, but yours is temporary', and she was telling me every day that it was going to get better and that she could see that my face was getting better. That helped to build up my confidence."

Group aims to help sufferers receive care

The name 'Bell's palsy' comes from 19th-century Scottish anatomist and surgeon Sir Charles Bell, who discovered that severing the seventh cranial (or facial) nerve causes facial paralysis.

Bell's palsy is a condition whereby the inner ear becomes inflamed, resulting in pressure on the facial nerve, which in turn causes facial paralysis on the affected side.

Facial Palsy UK's mission is for every person in the UK affected by facial palsy to be given access to the best information, treatment and support available. The group says: "Health services for people with facial palsy in Northern Ireland are extremely limited, even to cater for their basic fundamental needs. Many people are having to travel to England to access specialist treatments.

"A preferable situation would be a small number of locally based experts who would be able to keep a keep abreast of new research and treatments in this field. This will help ensure all patients are offered an equal standard of care".

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