Catherine’s Story

Catherine, aged 28, is a full-time mum and carer living in Enfield, North London. She has had Bell’s palsy since childhood and at the moment is holding her young daughter back from starting pre-school because she fears that she will be bullied because of her mum’s face.

1991 – Age 6 months

When I was about two the left-hand side of my face dropped. At first it was put down to possible nerve damage due to an eye infection. My mum kept going back to the doctors but was told not to worry, it will be fine, it will sort itself out, she will grow out of it etc.

But when I was five or six and starting school mum went back to the doctors and was told it could be Bell’s palsy, there was nothing that could be done, no tests or examinations were required as my face hadn’t matured.

2007

The doctor said that they would look at it again when I was 18. I had no specialist medical care for my Bell’s palsy between the ages of two and 18. During that time it would slowly get a bit better, but then every time I hit a stressful time such as a family member dying, exams, anything like that, it would fall again. By the time I was 16 my Bell’s palsy was slight, but I had many relapses over the next few years and by the age of 19 I had deteriorated further. That was life stress, just trying to handle being a teenager at college, exams, all of that.

Relapse end of April 2014

I carried on like that for quite a while with no real change until I was 23, then I literally woke up, text book case, screaming, pain down the side of my face, one side of my face wouldn’t move. I looked in the mirror and just cried as I panicked, as one eye streamed, I desperately hoped this time it was not a stroke. But at the same time a cold dread ran deep… oh no not Bell’s again.  I went to my local hospital, then to another after the first hospital felt ill-equipped to handle my case. At the second it was finally confirmed, I had Bell’s palsy, recurrent and severe. I received a course of steroids and then waited four months for an MRI and even longer to see a neurologist. I was also sent to ophthalmology but all they said was ‘why didn’t you come to us when you were four? We could have done something.’ I couldn’t believe it. At that point I was told, ‘try taping your eye’ and ‘you’ve gone this far I suppose you can live with it now, you’ve got through school, sorry’. I was also assured that as I was over 18 ‘the NHS would only deem my case as being cosmetic, therefore surgery wasn’t on the table’. Since then I have lived a life where my face is never a constant. I have had multiple relapses but not sought any more external support, until I had my daughter.

The lack of childhood support from doctors and the medical profession left me, but most importantly back then, my parents, poorly informed. Due to this I never taped my eye or used drops, my eyesight suffered. When my teeth came in they left pretty quickly too as food pocketed and plaque rocketed. I now have dentures but I only wear them for family occasions.

If I’d had support from the NHS, I would have had a point of contact to refer to as required. There was no information given to my parents, if they had known of a support network at the time, it would have helped me, as I can only now see how fabulous I really looked back then. With more support for me and for my parents from the NHS I truly believe my mental health would have been saved. But I despaired, hid away, and deteriorated. I have missed out on a lot. It’s not just the NHS that needs to support people with differences, it’s the institutions we spend the majority of our lives in, the schools that also need to know what their lack of support can do.

I’ve been bullied my whole life, which has never helped my self-esteem. Primary school was not easy but when I enrolled in an all-girls school it got a lot worse. I remember when I started they would practice their make up on me. Could they make me even? Fix me? Make me pretty, and most of all normal? Which honestly didn’t help. When that failed, the bullying began. Name calling mainly but every knock cut me. Ugly Wonk, Clown face, Crip, oh so many. I began to loathe myself, comfort ate and ballooned to over 26 stone, all of which attracted further insult to my acquired injury. If only school was where it ended.

2016 Proud mummy

I think that’s why when I was 18 and they offered me no support, I wasn’t bothered, because I didn’t like myself enough to care anyway. I think I care more now because I’m looking at myself through my daughter’s eyes.

Through my life I’ve learnt to try and stay as stress-free as possible to the point where I don’t really communicate with people. I don’t keep friends anymore and I’ve got siblings but we don’t relate that much. I’m dating my best friend from primary school and I’m going to marry him. My life is four people, my daughter, my parents and my partner. That’s my world.

My daughter is meant to be going to pre-school but she isn’t, mainly because of me. When my face gets bad I get very anxious, overwhelmed by stimulus, and socially phobic. When it is at its worst I won’t go out unless I absolutely have to – the worst it’s ever been was six weeks when I was 23, but it can affect me depending on the day.

I am very worried about how the world will treat my daughter because of me. I previously begged my partner to deal with it all; the school runs, parents’ evenings, plays and sports days, any of it. But he pointed out how untenable it would be, how restrictive I would risk making her life in doing so. She could feel that I’m not interested in her schooling, not willing to be open to her friends or the life she was building. If I took that path, I could become reclusive to the point I would probably restrict her friends visiting and play dates. Basically it would be 13 years of offloading and restricting, a strain no mother, daughter, or even couple could really foreseeably withstand without consequence.

Catherine with her family

So I know I have to face it, but with that then comes the secondary guilt. The bullying she could face because of me. The questions she will inevitably be asked “what’s wrong with your mum?” I resent the way I will have to teach her to deal with it. I wish I didn’t have to sit her down and empower her with venom in words to push back against them. I have to sour and taint her to protect her from a world that doesn’t understand her mum. How can that be the fair and right thing to do to my daughter to make her stronger against them?

That’s why now more than ever I’m willing to undertake any surgery to my face. Just so she doesn’t have to face the life of bullying, discrimination, and harassment I have. I didn’t care until I had her and then realised that what the rest of the world thinks is actually going to be her foundation in life.

I’m pushing myself to get referred to absolutely anywhere because I believe, if I can smile, semi-smile, properly by the time she’s five she won’t have trouble with bullies at school because of me. So I’ve got three years to pursue every avenue, any referral, examination and surgery possible. Most recently, I have had my first follow up with neurology, where I wanted to discuss my options. I was told I’m not suitable for Botox and that I will be referred for plastic surgery. A bittersweet surprise bearing in mind I was told cosmetic surgery wasn’t going to be an option.

2017 in pain but having a good time

Since then, I have asked the doctor if I could be referred to a specialist facial function clinic in London as I wish to know as much as possible before taking any drastic measures. Her response ‘no, because it will put you on the back of the pile for any surgery, if we send you there, so we’re not going to refer you. We are worried that if we do refer you they will spend 6-9 months doing diagnostics and you might not ever get anything done with your face.’

I’ve never been offered physiotherapy, I’ve never seen ENT and I’ve never been offered a Contrast MRI or CT scan. I think it’s only reasonable to want to understand the face I have before I agree to change it forever. How can I consent without being fully informed?

2018 having fun on holiday

Yet so far it seems the norm. I have spent my whole life being pushed from pillar to post. Looking and seeking support but I feel that the health service doesn’t want to know. Why bother to help people like me, we are the few. I’ve been pushed so far in every direction I feel pushed away completely. It’s anger inducing, just another unnecessary stress for anyone to contend with.

Now today luckily I’d say the Bell’s is more moderate than severe, where it’s semi-symmetrical at rest and my eye still doesn’t close. This is when I start getting worried because I know it can and probably will to go back again. It’s a horrible place to be in and with it being stress-related with me it can change from the morning to the evening. If I’ve had a particularly hard day I can hold my liquids in the morning and be completely orally incontinent by dinner time.

Prior to finding Facial Palsy UK and attending their London Support Group I had only ever met one person with Bell’s in 20+ years. A lot of people haven’t even heard of it and a lot of doctors don’t know what to do with it. I think people with facial palsy need to research their condition and trust their gut instinct to ask for the help they deserve.