John’s Story

John, 49, was struck with Bell’s palsy more than 30 years ago, while in his final year at school. He heard about Facial Palsy UK while watching the news, and was delighted to find out that a charity had been set up to support those with this often misunderstood condition.

At the age of 17, just before I was to sit my A-level mock exams, I suffered a severe headache which lasted for a couple of days. Then I woke up one morning to find that the right side of my face had dropped.

I was taken by my mother to see my GP. She sat opposite me and kept saying, ‘Poor you!’ She said that she wasn’t sure what was wrong with me, but I should just go home and get some rest and take some aspirin. After a couple of days, the headaches returned and I seemed to be losing the feeling in my right arm. At that point I was rushed back to my local surgery. I saw another GP who diagnosed Bell’s palsy and prescribed a treatment of steroid injections.

It was clearly an important time for me at school, and so after a couple of days I had no option but to return, still with the right side of my face frozen. I couldn’t speak, eat or drink properly and was in a state of anxiety, made all the more difficult when I overheard a couple of teachers referring to me as ‘the Elephant Man’. The conversation was overheard by a couple of my peers and for several weeks, both to my face and behind my back, I was referred to by that name.

I continued to sit all of my A-level mock exams over the course of that December. Having been an outstanding student through O levels (where I achieved 14 A grades) and throughout sixth form, I scored less than 40 per cent across all four subjects. Without taking into consideration my evident physical condition, my parents and I were called in to see the headmaster. He severely reprimanded me in front of my parents who immediately responded, and as a result withdrew me from the school.

Rather than being in any way empathetic to my situation, the school stated it was for the best: they were clearly concerned that my A-level results could have dragged down their achievement rankings. Interestingly, their A-level results that year were the worst on record.

With the support of a private tutor, I went on to gain two C grades at A level that summer – and a year later, two A grades in other subjects via a sixth form college. But for me, everything had changed. Before having Bell’s palsy, I had offers for places at three universities. As a consequence of everything that happened, these were either withdrawn or had to be declined. My confidence in my own academic abilities never really returned despite my success in ultimately achieving four A levels; so I didn’t go on to university at all and ended up starting work straight away, and taking a vocational part-time degree course linked to my chosen career. Even then, study never seemed to come as easily as it had before, and it took me a year longer than my peer group to complete my degree.

My frozen face took about three months in all to more or less recover; but to this day, my right eye constantly weeps, my right eyelid sags, and I have occasional tingling sensations across the right side of my face. What I find extraordinary is that all of this still remains so vivid for me, even after all these years.

The level of prejudice I had to live with over that period was astounding, and I question whether things may have shifted. A few months ago, I bumped into a former classmate in the street and the very first thing he said to me was, ‘Oh, I see you’re still a bit lopsided.’ Needless to say, I swore at him and walked on. If ever an opportunity arises for me to talk about my experience (which is rare), I try to explain what happened to me. Most of the time people are amazed because they have never heard of Bell’s palsy.

I hope that telling my story will be of use to someone.