Milly’s Story

Milly was diagnosed with Bell’s palsy at age 15 just as she started her GCSEs.

Before Bell's palsy

Before Bell’s palsy

My name is Milly, I’m 20 years-old and I’m from Surrey. I’m a university student studying paramedic science, I love baking, swimming and going out with my friends. Just over five years ago was a day I don’t think I’ll ever forget. In October 2013, three days after my 15th birthday, I was diagnosed with Bell’s palsy. The previous day I had a headache which was bad enough for me sleep on and off throughout the day. I woke up the next day, feeling fine and went to school as normal, a bit tired but nothing too bad. During the day I noticed a few things that didn’t seem quite right; during lunch my sense of taste disappeared and my eye began to water despite feeling very dry. I found myself holding my cheek up to blink, the pain in my head had returned and I didn’t feel like my normal self. I didn’t know what was wrong.

Milly day of diagnosis

Milly day of diagnosis

When I came out of school my mum was waiting to drive me home, and as soon as she saw me she knew something was wrong. Thinking I had had a stroke, mum called the doctor from the car and explained my symptoms and we were asked to go straight down for an appointment. The GP was very thorough and asked me to try to do lots of things with my face and arms, asking me to raise my eyebrows, stick my tongue out, blow my cheeks out and asking for another opinion eventually decided that I had Bell’s palsy. I was given a course of steroid tablets to take for 10 days, advised to use eye drops to keep my eye moist and tape to keep my eyelid closed at night to stop it drying out. I was told it should all clear up within a few weeks at the most.

Just after diagnosis Dec 2013

Just after diagnosis Dec 2013

Mum insisted I had the next day off school, which I did, although somewhat reluctantly. I knew questions would be asked and people would stare but, I had just started my GCSE’s and was desperate to carry on as normal. The next day I met with my Head of Year before school and they were incredibly supportive, letting me take it one day at a time and understanding that I may wish for time off or shorter days. My teachers were all informed and were also very accommodating. On the whole I had a good group of supportive friends and managed to carry on as normal with most things. There were definitely a few comments that got to me, some people who looked over for longer than normal and I’m sure there were plenty of comments I didn’t hear or see. I was incredibly stubborn and determined, I’d not let anything beat me before so this was not going to stop me.

Three weeks passed, I had no improvement, three months, still nothing.

My Bell’s palsy didn’t get any better, in fact I couldn’t close my eye for 10 months. My eyelashes on my left eyelid were sparse, having been pulled out by the tape I had to use every night, and sometimes during the day. My sense of taste changed, I’ve never been very adventurous with food, but now I had no real desire to try anything new at all. Food all tasted bland and weird textures completely put me off. Drinking was a nightmare every time I drank, the liquid just poured out of the side of my mouth. I tried everything from straws to spouted bottles but nothing really worked unless I physically held my lips together. The inside of my cheek was swollen from being bitten repeatedly, it didn’t hurt as there was very little feeling but I often found it bleeding without me knowing. When I ate, my eyelids closed involuntarily and my speech was slurred, I struggled saying almost any words clearly.

I saw an eye specialist, as my eye had been open for such a long period of time. No damage other than some small debris was seen and I was advised to carry on with eye drops and tape. He did say that if there was no improvement that I could have a gold weight inserted into my eyelid to help me blink. Over time and with lots of practice my eyelid began to close which was a huge relief to me. It was the first real sign of any kind of improvement I had seen and although it wasn’t perfect and the rest of my face was still droopy and frozen, I found myself believing for the first time since my diagnosis that maybe I would get my face back.

Two years into recovery

Two years into recovery

Throughout my Bell’s palsy I have experienced headaches. The first three years after diagnosis I was barely going a day without feeling pain in my head. I would often fall asleep halfway through a lesson and I spent my lunches in a classroom lying on the floor or with my head on a desk. Some days my head was so bad I wouldn’t get out of bed. Sharp pains from my forehead to the back of my head and an ache all over my left side. They’ve improved massively in the last two years, their frequency decreasing with time as has their duration.

One of my mum’s friends has a daughter who is a physiotherapist at a hospital with a specialist facial palsy unit and through a chance conversation, just over two years after my diagnosis, she recommended that I should go there. Mum managed to get the consultant’s name and then contacted my GP for a referral. This proved to be a battle as there was no funding and the GP had very little knowledge of the hospital’s speciality. Luckily, because we had the name of the consultant and I was having such bad headaches he agreed to refer me for a scan and physio directly.

So, almost three years after my initial diagnosis, I finally met a specialist consultant, and had a very thorough examination, they took photos and explained all my options. Being told that one of my options was to have a total face peel and my nerves re-attached scared the life out of me. I was 17 and a few days after being told this came home from college and cried on the floor for two hours. The prospect of a major surgery when all I wanted was physio, was terrifying. We had a few appointments to reassess how things were going and I was sent to have some nerve tests in my face, this involved having needles in my face and an electrical pulse passed through them whilst trying to perform facial movements. Not much fun but it showed that I had good tone in my nerves and muscles and that I should respond well to specialist facial therapy. Another wave of hope and belief my face would return to ‘normal’.

After a couple of sessions with the physios I was offered Botox injections as an additional help to aid my recovery. This didn’t go well as I ran out of the room terrified. I carried on with physio, determined not to let anything set me back further and saw slow improvements in my appearance. A year after my failed attempt at Botox injections, I decided to give it another go, and starting slow, I had a single injection to help get rid of my dimple on my chin, a result of a tightening in my muscles.

The hospital facial palsy team also run a support group that is held on a Saturday, once every few months. This has proved to be a great help and is open to both patients and their family and friends. I went to my first meetings alone, but since then I have invited my family to join me. The people I’ve met at the support group have helped me immensely, their experiences and advice have been invaluable, and I would recommend attending to anyone who has facial palsy. I am the youngest there and am yet to meet anyone my own age with a facial palsy, but just meeting others who have experienced a similar life changing diagnosis has been extremely helpful.

My smile is so much better than it was, my eye now closes almost fully and I’m much more confident in myself. I have very few photographs of myself in the last five years, I avoided them as much as possible, always offering to be the one to take it rather than be in it. Having to explain has always been quite difficult, but most people I know have always understood. I’ve taught myself how to take photos where my difference isn’t so visible and although I still hate having my photograph taken, I know how to hold and compose my face to look as symmetrical as I can.

Milly now

Milly now

I believe that awareness is key for the future of facial palsy. As someone who had never heard of the condition until I found myself living with it, any ways of introducing it to the public eye will help greatly. I was lucky in that I didn’t experience too many comments about my appearance, but I think it’s important to make people aware of how even the smallest comment about someone’s appearance, even if not meant in a mean way can have a huge impact. We live in an ever-accepting and open time which is incredibly fortunate, but attitudes towards appearance can still be jarring and cruel. The loss of identity that comes with facial palsy left me almost grieving for the face I had before, the acceptance of that loss takes time and patience. Forcing changes can cause more harm than good, learning to pace yourself and take your time can be frustrating, but is important.

I continue to hope that my face will one day be mostly back to ‘normal’ but know it will never quite be the same. It’s taken me a long time to accept this but it was made easier through the people who I’ve met along my journey.

Having recently started university I’ve met a completely new bunch of people who have all accepted me and welcomed me into their lives. I was nervous to meet people who didn’t know about my face and felt they were sure to bring it up or make a comment but I was pleasantly surprised when most of them said they wouldn’t have known had I not explained. My face is not ‘normal’ I still have a long way to go but I know if I continue with therapy and keep my determined attitude I will get there slowly but surely.

Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.

Last reviewed: 28-02-2019    ||    Next review due: 28-02-2022