Mandy’s Story

Mandy, born with facial palsy, struggled for many years, but with the right support now knows that she can achieve anything she puts her mind to. 

Mandy as a toddler

My life before Facial Palsy UK existed was quite different to life as it is now for me in many ways. I was born with left sided facial palsy with unknown cause. No-one really knew much about facial palsy when I was born and my doctor was none the wiser about what could be done. All my mum was told was that I had Bell’s palsy. It was only when mum saw a programme on the television about someone with facial palsy that she went to the doctors and told him “You are referring her there”. I was there from the age of 6 until I was 19.

During this time I was operated on many times. It wasn’t until much later in life that I realised that this was my happy place. I still remember my hospital number, the nurses that were there time after time, even the play leaders’ names, and that I couldn’t wait to be a teenager so I could go into the teenagers’ room. When I reached the age I was allowed in, it was closed, so I had to wait even longer and when I got in there it really wasn’t worth the wait! My mum used to travel up on the workman’s coach and be there from the moment I woke up until the moment I fell asleep, never once did she leave me. It wasn’t until I was older that my brother and sister told me that they resented me for this, because they were left with people and I had all my mum’s attention.

The reason this was my happy place was because I fitted in, I think this is why I continually agreed to have operations. I only remember one occasion where I saw a psychologist and that was with my mum. The only thing that bothered me was having photos taken. They had a teacher at hospital and you had to do school work. I was happy and my school grades were good considering the amount of schooling I had missed. I wasn’t phased by anything and my mum was told I was doing great.

Mandy at Primary School

I remember being bullied at my first primary school and telling my mum. She would go up the school every time but the head teacher used to say “I don’t know what you want me to do, how do you want me to handle it?” This made things worse but not only for me but for my brother who was at the same school, so I stopped saying anything. The bullying didn’t stop, I just kept it to myself.

Changing primary school was a new start when we moved house. My mum took me to the school and we sat with the headmaster who asked what he could do to help me settle in easier. I remember there being an assembly and me being introduced to the school and the other children being told I had Bell’s palsy, and I looked different. This made me feel more vulnerable. Because I was off for long periods of time I didn’t really have any close friends at school, l remember being in the playground on my own a lot. Because I wasn’t very confident I didn’t know how to join in with other people and I didn’t want to ask if I could play with them.

Mandy at Secondary School

Secondary school was okay, there were a couple of bullies but I got used to it. Anything negative that was said I accepted what they were saying, believing everything they said was true. If anyone said anything nice I never believed them. I had no confidence and I never stood up for myself or let my feelings be known. I had friends in school but never a best friend. At that age you become even more aware of your appearance and I hated mine with a passion, I kept my feelings about my facial palsy to myself. I don’t think I really spoke about it much, if anything it was just about what surgery I was having.

At the age of 19 I left the hospital, it had changed a lot by this time. My ward was knocked down and a new one was in its place with a new name. Nurses I had known the whole time were no longer there. Mentally and physically I was drained. It was no longer my happy place and everything had changed. I couldn’t cope with so many different changes all at once, nothing was familiar.

When I became pregnant with my son I worried so much getting myself in such a state – the fear of would my baby be born with this? What would he think of me with this face? Panic! I felt like I needed more surgery to make things better, I even tried a faith healer! My son was born and the doctor was great checking him all over, he was perfect.

I tried another surgeon as I wanted them to do something before my son started school as I didn’t want him picked on because of me. They didn’t look me in the eye when they were talking to me and I remember them saying “what do you expect me to do? Don’t you realise you have had 5 star treatment?” He agreed to operate but I couldn’t go through with it, I didn’t have a connection and there was no trust and he dismissed my feelings. This just made me feel guilty for the way I felt even more!

My son was bullied at school because of my situation, I asked the teacher to speak to his class but they didn’t see a problem and said it’s just kids being kids! I felt so guilty and thought I was a bad mum all because of my facial palsy. My son even had a slightly wonky smile and he couldn’t read expressions. As I was his main carer he just copied me. Yet to him I was his mummy and even growing up he was never phased by my facial palsy, he loved me just because of who I was.

Mandy and Martin

Life rolled on, job interviews were a disaster. I felt they took one look at me and had already decided I wasn’t right! People thought I was making it up but you just know. I had a couple of jobs but nothing fulfilling. I was getting unknowingly more and more depressed and resentful of the way I looked. I had just met my future husband Martin, and couldn’t believe how lucky I was! But not even meeting my soul mate could pull me out of this. It was once again, panic! How could someone like him want to be with me? What would his family think and more importantly what would his daughter think of him being with someone with facial palsy? It didn’t matter how many times he told me I was beautiful or how much he loved me, all I could think was I don’t deserve someone like you. I also felt so lucky to have my step-daughter love me the way I was. The way I was feeling I hit an all-time low and I was finally referred for counselling. But when I got to the top of the list, the funding in my area was cut! My new doctor was brilliant though and even though she didn’t know much about facial palsy she did all she could. After receiving funding I went to a maxillofacial clinic, they couldn’t help me but knew someone that possibly could and from then on things got better and better.

This is where Facial Palsy UK came into my life! I attended the first brainstorming meeting before the charity officially launched. It was a success and for the first time in my life I was looking forward to the future. Myself and my husband were invited to be a part of the community advisory board for Facial Palsy UK. It felt like such a privilege to be a part of this with people wanting to hear mine and my partner’s experiences and feelings all about facial palsy. I was 34 years old and it was at this first meeting I met someone like me! Someone else that was born with facial palsy. It was truly overwhelming after all the years of being and feeling alone.

While attending one of the charity’s support groups I was given advice and tips on interview techniques to give me more confidence for a promotion I was going for and even though I was so nervous I remembered everything I was told, and I did it, I got the promotion! Not only did I get the promotion I was given the opportunity to go on a year course travelling to different places in Europe and with people I had never met. This was something I would have never done before, mostly because of no confidence and the fear of meeting new people and having to communicate. To graduate, part of it was to give a presentation. All I could think about was I can’t stand on that side of the stage because people will see my facial palsy. I got myself so worked up and I was in a mess, but I pushed myself and I did it.

Mandy and the founder of Facial Palsy UK

I now have a desire to push further and achieve more by not hiding away, by building my confidence and not letting what I look like hold me back. I have had the opportunity to volunteer at the family fun days which have been amazing for me. To see families be able to talk about their own experiences, share information and the kids to know that they are not alone is something I wish I had growing up. I have people to talk to, people that understand me, people that can relate to what I’m saying and to know I’m not wrong for feeling the way I do. I have had help with dealing with my depression. This is what Facial Palsy UK has helped me achieve in such a short time, without this charity without the support groups, the information I have been given and the support from everybody involved with Facial palsy UK, whether it be the web page, social media, support groups or the friends I have made, I honestly don’t know where I would be. Just because you are born with facial palsy it doesn’t make you accept it any easier. I still have a lot of bad days and things to overcome but those days are not as bad as they were.

This is my facial palsy face, this was a face that felt so alone, this was a face I was embarrassed and ashamed of, this was a face that had no confidence, and this is one of many faces Facial Palsy UK supports with all the above issues and much, much more!

Growing up with facial palsy can be hard at times, but I have learnt with the right information and taking the support that is now offered, that anything and everything is achievable and you will be okay! Fears and worries will always be there whether you have facial palsy or not. If this charity had been around when I was growing up I know my story would have been so different.

Mandy’s story read out at Facial Palsy UK’s AGM 2016

Update

Mandy sadly lost her battle with cancer on Tuesday 17 January 2023 and will be sorely missed.

Tribute to Mandy Brailsford