Why I will never give up

I was born with facial palsy, it meant I couldn’t smile in the same way as my friends. I couldn’t close one eye or blink it. I thought I was the only one in the world with the condition because no one told me any different.

Bullied at school because of my face, I did my best not to laugh in front of anyone because the fear was so great of being taunted. I got used to making tight little smiles. I felt so isolated, not having anyone to talk to who understood. I was just the girl with the funny face, I didn’t feel like I had a genuine health condition, which of course I did. At age 16 a potential employer told me I seemed confident but then I hardly ever smiled, they found this unsettling. I was hampered by this inability to show emotion on my face. It took twenty years for me to feel comfortable enough to laugh in front of my husband. It’s been hard work unpicking those insecurities.

I found out by accident that I was not the only person born with facial palsy, I made contact with ‘another me’ in Canada via the internet in 2005. Jennifer and I were even exactly the same age, both born in March 1969. Jennifer had received help with surgeries and a gold weight in her eyelid to aid closure. The Canadians were ahead of the game in facial palsy surgeries back then. I still had not been prescribed eye drops for an eye which was permanently unblinking. I was in my thirties. I was undergoing no regular eye checks at all. It wasn’t that I hadn’t asked for help, I had. The first doctor I saw as an adult told me that nothing could be done for damaged nerves, end of conversation.

After talking to Jennifer, I approached my new family doctor who looked into my records and found I should have been followed up by Addenbrooke’s Hospital when I was 12. I don’t know who is to blame for me not having that appointment, it might be someone decided I didn’t need it. I don’t remember anyone ever asking me if I wanted to see someone about my face. I had the appointment twenty years later, Addenbrooke’s still didn’t offer much help, they were just intrigued by my face, you become someone of interest to all doctors when you wear your condition so publicly. I went to the breast clinic a few years ago about a suspicious lump and the doctor immediately wanted to know what was wrong with my face. Doctors in their curiosity can be incredibly rude and intrusive, without realising. I suppose we should be grateful that they want to learn, so I don’t complain, but it catches you unawares sometimes. The good news was that my GP did refer me to the eye clinic at the local hospital, for the first time in my life I was prescribed lubricating drops for my eye which were to be taken regularly. I grew up in so much pain, you know how awful it feels when you get something in your eye? It was like that, every single day.. You automatically try and blink to relieve the pain but with only one eye with a working blink, reacting to the pain just made me look more obviously different.

By then I had a young family, I tried helping out with reading at my children’s school. The teacher left me alone with a group of Year 2 children and a little boy started mimicking my face and making the other children laugh. I was distraught, I held it together until the end of class, but I immediately stopping being a reading assistant. Sometimes it feels like nowhere is safe, and that is why so many people with facial palsy become hyper-alert to comments, looks and stares.

With the internet becoming part of our every day lives I soon found there were many more people like me. I started reaching out and offering support, even building a website about facial palsy. Mothers of babies born with the condition came to me for help, people with facial palsy due to tumours reached out, and suddenly I felt less alone. I started to talk to my family about my feelings about facial palsy and they responded “Well it never bothered you before..” No one ever thought to ask how I felt and I just didn’t think people would understand. I was also embarrassed. I made friends with people with facial palsy via a Facebook group and we arranged to meet in person. I was terrified that I would look at these people and it would make me feel worse about myself. It was so surreal though and the best thing that I could have ever done to help myself. I realised that people see past the facial palsy, you just see the whole person with their personality bubbling over. I stopped noticing everyone around me had facial palsy, it normalised it for me. It was a lightbulb moment. I think the problem is that you don’t ever see yourself truly as other people see you. If you go to look in the mirror and check what you look like, you’re not animated, you automatically arrange your face how you want to see it. It is easy to live in a bubble where you never have to see your animated face, you arrange your face in selfies, take them from your good side, hide ‘the real you’ in plain sight. You align yourself with that identity and it can be a shock to suddenly see yourself caught unawares laughing in a photograph or a shop window. That isn’t you. But it is you, it’s the other you, the secret you. Yet the irony is that it was never a secret, you only thought it was. How do you align these two versions of yourself so you can feel more whole?

I was approached to help set up a charity called Facial Palsy UK in 2012 and it was the best thing that could ever have happened to me. I now run the charity as my full-time job. I’ve gone from being someone that suffered with years of crippling anxiety and depression to someone that gives talks to a room full of surgeons. This charity has literally changed my life. I now laugh in front of my husband and I also found the little boy from the Year 2 class (now 18) and told him how he made me feel. I educate everyone I can about facial palsy. It is a hard job, the hardest job I have ever done. The hours are long and running a small charity you have to know so much: data protection regulations, HR laws, charity law, fundraising regulations and laws, the list is endless. In the first few years I had to enlist my whole family to help with events. You despair when you read Daily Mail articles (I try not to!) about the salaries of charity CEO’s and how all the money goes on admin! Those articles are like a kick in the gut when all you want to do is help people, and you feel so undervalued by society. You are also that person on the end of the phone supporting others, I try not to leave anyone waiting too long for a response, every person is valued. I usually remember everyone I have ever spoken to during my eight years with the charity, some people I have been supporting even longer.

Now of course we have the COVID-19 crisis, many of our volunteers are health professionals who have been reassigned to the front line. People are still in need of our services. There are 54 different causes of facial palsy and I’ve become something of an expert, albeit not a medical expert. But I now know when someone’s facial palsy could potentially be caused by cancer, I have helped to save a life. Facial palsy is often dismissed as something cosmetic, not much importance is placed on the function of the face, until it no longer works. Our work is so important because we help people access medical help that is rarely routinely offered to patients with facial palsy.

Work is particularly hard at the moment. I am worried for the future of the charity. I am not worried for my future. One thing having facial palsy does is make you tough. I worry for the children who need those precious family days where they get to meet other children with facial palsy, they have that lightbulb moment it took me over thirty years to reach. Childhood is such a short moment in time, but it influences your self-esteem and your self-confidence. You carry those feelings into adulthood. We only have a very small window to make a difference for children with facial palsy, to ensure they never feel as alone and ‘different’ as I did. We are not eligible for most of the government funding. If we don’t get more funding in, this will set us back five years. I will never give up though, even if I have to get another job and go back to volunteering in my evenings, I won’t let another child grow up feeling like I did.