Lilly’s Story

Lilly has had Bell’s palsy since she was 13 years old, here she shares her story.

I am now nearly 50 years old, I live in the north-west of England. I am now retired having served in HM Forces Army and in a local Police force.

I have had Bell’s palsy since I was 13 years old, so me and Bell’s palsy have been together longer than we haven’t. We are friends, not good ones but just friends.

My palsy presented without warning whilst I was playing in a school rounders match and that was that. When I got home from rounders I don’t recall any kind of panic from my mum or dad, just take her to see the doctor tomorrow. The following day my mother took me to my GP who diagnosed me straightaway. He was an ENT consultant before being a GP. I was immediately sent to my local hospital where I had a hearing test and an eyesight test. Both tests were normal so I was recommended to go for physiotherapy.

I will be very honest, I didn’t really know what I had or what was going to happen. So I just went along with what I was told. No one explained anything.

So I started going for physio, this started off okay, I had a really nice lady physio, she explained what she was going to do. My physio consisted of three sessions a week, with what I called electric shock treatment. I had metal plates placed on the top half of my body and then two prongs placed on my Bell’s palsy side and then electric current passed. I had no idea what this would do, I just went along with it.

I went to my physio sessions alone, my parents really could not be bothered to attend and in the 80’s that’s just how it was. After two weeks of going to hospital for physio, one day I went and found a trainee male physio was going to conduct my session. This is where it became frightening. I sat waiting for him to wheel the big machine in, this he did, I then lay down on the physio bed and watched what he was doing. This was normal for me. But then he turned the big dial on the machine up to 5, now I knew I only had 2.5 on the big machine. So I asked him if this was the right setting. He told me to ‘shut up little girl you don’t know what you’re doing.’ I can remember sitting up and asking him to get someone else to come. He then pushed me back onto the physio bed and just stuck the prongs on my face. Everything went black and I woke up on the floor staring at the ceiling with lots of people around me. I stayed at the hospital for a while and was then sent home. As mentioned before, no one at home was bothered about my visits to hospital so I just went home alone. I decided it was better to be alive with Bell’s palsy than dead so I didn’t go for any more physio. No one noticed I wasn’t going either, not my parents, hospital nor GP.

Sadly through all this my school told me to stay away, they didn’t know what to do with me, they said they thought I was contagious so I had to stay away. I was at a crucial point of my education and I ended up missing 18 months of schooling. My only teacher who sent work home to me was my French teacher. Otherwise I spent my time sat in the library in town reading books about all sorts as I didn’t know what I needed to learn for my exams. The sad thing for me was that I liked school, I still like learning. I missed so much my exam results were awful. My careers advice at school was, I never forget this, ‘Get a job at night where no one can see you and you don’t see them.’

It wasn’t a great time, those words stayed with me.

The one thing that I have always loved is sport, I still love sport and I think that was my saving grace, and is.

So there I was no hope, family who by now mum and dad were divorced. I was left to my own devices and had no choice but to make my own way.

I didn’t know where I was going to belong or what I was going to do, but I knew that if I was in the Army I could play sport. So, I went into the recruiting office and this, I now know, was the best decision I would ever make. I explained my situation to the recruiting staff, they just said, you pass the entrance exam and the physical tests then no problem… And I sailed through everything. The very best time I have had. The Army was fantastic. When I left the Army I joined a local Police force.

Throughout my life I have been told there is no treatment for Bell’s palsy. I then discovered Facial Palsy UK, the charity had just been set up, so I was thrilled to be involved. I had never seen, met, knew anyone else with any kind of facial palsy. I went to the first of the support group meetings where I was delighted to see other people and hear their stories. Though this group, I was made aware of a specialist clinic at a Manchester hospital, and I decided to seek treatment there.

In 2014 I had my request for funding for this treatment declined, it’s a bit of a longer story. My Clinical Commissioning Group class me as having a clinical illness of low priority. I have seen my MP about it but he wasn’t any help, so I pursue this at home writing letters, making Subject Access records requests and so on. I am not a woman who will give up.

Facial Palsy UK have been very supportive, we must ask questions and keep pushing the medical profession. Having facial palsy is not just cosmetic, it is multi-dimensional, everyone is individual and reacts very differently to situations. We collectively must keep pressure on those who won’t listen, and push until treatment is routinely commissioned.

To those who might have lost their way though having facial palsy, keep going forward, you have the ability to choose your path and to stay on it. Nothing is off limits. Last year I finally passed my A level maths… I have waited for such a long time.

Embrace your uniqueness and embrace the challenges!

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Last reviewed: 22-02-2017    ||    Next review due: 22-02-2019