Marvin is 41 and he lives in Bath, here he describes his personal battle with Bell’s palsy.
I remember the exact time and day I started to lose my face; it was 11am on 6th October 2010; by the evening the whole of one side of my face had collapsed. My working day as a Business and ICT teacher at college started normally, but it was when I went to take a drink late morning that I realised something was wrong, as the water flew out of my mouth. A student then mentioned that something strange was happening to my face.
I immediately went to the doctor’s surgery; all the adverts about stroke tell you to act F.A.S.T. I was left in the waiting room for about half an hour though, as my face became progressively worse. When I eventually saw a GP he wasn’t sure whether it was a stroke or Bell’s palsy, this was because my forehead still hadn’t collapsed at this point. I was therefore sent in an ambulance to the Stroke clinic at the local hospital. The consultant there told me that a larger stroke often follows a mini stroke and I might only have 48 hours to live. I said goodbye to my children that night not knowing whether I would ever see them again. They treated me as having had an acute stroke for two days, I was given aspirin to thin the blood to try and stave off another bigger stroke. After doing an MRI and CT scan, they decided it might be Bell’s palsy. Then someone decided it might be a stroke again and then finally they settled on the diagnosis of Bell’s palsy. It was a very scary and confusing time. They say you can often differentiate between Bell’s palsy and stroke by checking the forehead but no one seemed to have monitored the changes in my forehead, it was completely paralysed by the end of that first evening when I was admitted to hospital.
I was discharged from the hospital after four days and then given steroids and antiviral medication. I had to beg for an eye patch because I couldn’t close one eye. I went back to work the next week, just a few days later, I’m an ex-soldier and don’t give in to illness easily.
Bell’s palsy doesn’t have a definite cause but has been linked with stress, and I was going through quite a tough time when this happened to me. I’d had some big changes in my personal life which were distressing; I’d also just finished a degree and started a new job. The strange thing is though that I had been to war when I was in the army and I had always carried stress okay back then.
How did this affect me at the time? I couldn’t speak; I had to hold my face up to form words. I was visibly deformed, my whole face had collapsed. People would stop and stare at me in the street, people laughed at me like I was a freak and one day I had to chase off some kids who did this. People I knew stopped talking to me, they were uncomfortable with the situation and I had no support at all. I wish people had just stopped and asked me about it rather than react in this way. My eyeball was bone dry because it wasn’t blinking or closing for sleep. Eating in front of people was embarrassing; it’s unbelievable how some people react to you. I have to admit I used to be quite a vain man, I used to be able to get any girl I wanted; yes I did think I was Mr Perfect. The hit of going from that to feeling like you were now in a cage for people to throw bread at was really challenging. I met my girlfriend on the phone and obviously I was self-conscious about meeting her. I got a Tens machine and stuck it on my face to try and get my lip to move, my lip went into spasm and was completely frozen, I was that desperate for some recovery.
I took a supply of straws with me to work and one day I had to do a course in the boardroom. I tried to drink some coffee and it just flew out of mouth, I knew people had seen but politely they didn’t say anything, I was so embarrassed though that I burst into tears when I left the room.
That November was one of the coldest on record, I remember trying to watch my son play football, I’d left my eye patch off so I could see the game. It was so cold my eyeball froze because I was unable to blink; I remember having to warm my eye up with my hand. People think this condition is just cosmetic but don’t understand all the difficulties that come with it.
My girlfriend says I have a mean side of my face and a happy side. I do notice that if I am driving in my car, if people look across and see the paralysed side then they appear intimidated, because my face isn’t moving.
I’ve been to war, I consider myself to be a ‘proper proper man’, yet Bell’s palsy shook me to my foundations. The psychological impact on someone with this condition is immense; it really damages your self-esteem and confidence. Yet there was very little support for me, I had to hunt out ways to help myself online, my GP surgery couldn’t offer me much hope. They did arrange for me to have some hypnosis which helped. Three people in my street have had this condition, one lady has had it seven or eight times, yet health professionals don’t seem to know much about it at all. All the people I know who have had Bell’s palsy were given steroids straightaway and they made a good recovery. Unfortunately my face has never fully recovered. I can’t help but wonder if I had been given the steroids within the 72 hour window whether this would have given me a very different outcome. I know they don’t guarantee a full recovery but clear evidence has been published that treatment with the steroid prednisolone improves chances for complete recovery if given early enough. I was only given it four days after I first went to see my GP; the delay in diagnosis may have irreparably damaged not only some of the functional aspects of my face but more importantly my confidence and self-esteem. I will never know.
I went back to my GP three or four times, sometimes in tears, to see if there was more they could do to help me but he said after a year what you are left with is what you have to live with, no further support has been offered to me. I feel that there needs to be some strategy in place to give people the follow-up care they need, it doesn’t seem right that they have to resort to internet forums for advice and support, especially when much of the advice online is contradictory. Doctors need to take this condition seriously; it is a destroyer of confidence and self-esteem. 75% of our communication is non-verbal after all. People with this condition need to know how they can help themselves and how they can prevent themselves from going blind in one eye!
How do I feel now? My eye now closes but not fully, sometimes I get facial spasms, the muscles become tense. I am aware of it when I laugh and my face gets tight when I’m nervous. It’s like a computer virus, running around in the background, affecting everything you do. In photos you find yourself automatically turning your head to the side so people can’t see it, it really knocks your self-esteem. Before Bell’s palsy I was always the first person in the photograph but now I am very different. I recently graduated and my girlfriend bought the graduation photo, it sits in a cupboard where no can see it.
These days I am very strict about keeping healthy, I take vitamins, I don’t drink and I try not to get stressed. It has helped being a teacher because I had to get straight back into it; I had to accept standing up in front of people and being stared at.
Emotionally I feel like I have been to war, so much so that the eye patch I begged the hospital for now lives with my war medals under my bed. Bell’s palsy has been another battle for me.
Marvin has kindly been a media volunteer for Facial Palsy UK raising awareness of Bell’s palsy. His story was featured in the Guardian in 2014.
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: 18-11-2016 || Next review due: 18-11-2018