I had Bell’s palsy in 2005 when I was 30 years old and 37 weeks pregnant. I had just started maternity leave when I suffered an unremitting headache for about a week. Then one day I went to bed feeling like my tongue was burnt down one side and when I woke up the next day, my face felt very odd and slightly numb. I knew something wasn’t right, looked in the mirror and was shocked to see the left half of my face wasn’t working properly. I went to my local maternity hospital who confirmed that the baby was fine (which was reassuring!), and a doctor diagnosed Bell’s Palsy. At that point, I was relieved it wasn’t a stroke, but was still pretty anxious.
I saw my GP the following day. I realise now that he was probably trying to reassure me, but I recall he came across as dismissive of my concerns; he was reluctant to prescribe any medication due to my pregnancy, and his strong belief that it would self-resolve quickly anyway. I feel quite sad and angry when I think about that interaction now, because as it turned out, that wasn’t the outcome for me, and I hope that GPs are better trained nowadays.
For the next two weeks half of my face was completely paralysed, and I was in a lot of pain. The paralysis affected my ability to speak, since my lips didn’t work properly. I stayed home a lot, and relied on my husband to speak for us, such as when visiting potential nurseries for our baby. I was extremely self-conscious and didn’t want people to see me, or to have to talk to anyone, especially if they didn’t know me.
The paralysis continued for about six weeks. During labour I couldn’t make my mouth fit round the breathing tube for the gas and air, and was still quite self-conscious of people seeing my face. Once the baby was born, I was reluctant to smile in photos and started to avoid being in front of the camera if at all possible, or pose myself carefully so the palsy wouldn’t be noticed, keeping my lips closed for a half-smile and tilting my head.
When the baby was two weeks old, and I still wasn’t recovering, I went to see a doctor privately. He arranged an MRI which came back normal, but when I saw a different doctor at the second appointment, he pointed out that my facial tone had returned since my face wasn’t drooping anymore on one side. This was the first piece of good news I had received, and I was glad for such specific and useful feedback.
I did also see a physiotherapist, who gave me a machine that had little electrodes to attach to the midline of my face. I used it for several weeks, but I’m still not exactly sure what it was supposed to do, nor whether it made any difference. Some movement was coming back, and I would regularly examine my face in the mirror, trying to notice any slight improvements and secretly hoping that it would miraculously resolve itself. I also tried acupuncture with a lady who believed I had wind trapped in my face, which she tried to release, but it made no difference.
As my face did slowly improve somewhat in muscle tone and movement, synkinesis also kicked in. I worked out that I could fully close my eye if I screwed my face up; I now realise what a mistake this was, but was ignorant at the time, given the lack of available information. After a year, I was resigning myself to my new look, and had to return to work with my new ‘wonky’ face. I work with children and families, and spend a lot of time in my job talking face-to-face with people. Giving out appropriate body language was important, but I no longer trusted my facial expressions. I was paranoid that everyone would notice, and that it would impair my ability to do my job. Luckily, none of my fears have ever come true.
It’s been 20 years now. I accepted a long time ago that my face has recovered as much as it is ever going to. The left side of my face is still weaker than the right: I can’t lift my eyebrows equally, my left eye blink isn’t complete, my smile is asymmetric as the left side of my lip only moves a tiny amount. I can’t whistle, or form a seal with my lips.
In many respects, the synkinesis is harder to tolerate than the weakness. When I smile, my eyebrow pulls down in a frown. My eye muscles tense when my mouth moves so that it now appears smaller. My neck pulls taut when I smile. My cheeks spasm sometimes and I have a deeper nasolabial fold on the left side. I don’t wear eye makeup anymore since I have to touch my eyelid a fair bit to close it properly or wipe away excess tears. I still pose carefully for photos, or avoid them. When I see myself on videos, I clearly see the asymmetry and synkinesis, and though I am used to it now, I still don’t like it.
However, I still have old friends and I’ve made new ones too who never knew me before Bell’s Palsy; my children have never known me without it, apart from what they see in old photos. I carried on working in a career I love, I have a healthy marriage, 2 wonderful children, and continue to be a passionate amateur gardener, baker, piano player and potter, so I have a lot to be thankful for.
Nobody has ever spontaneously commented on my face and I don’t often talk about it. I notice how the past 20 years have aged each side of my face differently, and I wonder how it will continue to change in years to come. I have always worried that if I mention it, people will look more carefully at me, and notice the asymmetry that might hopefully otherwise go unnoticed. I have explained it when it’s relevant and people have mostly been surprised and curious, and it hasn’t been the big deal to other people on the outside that it has felt to me on the inside. I hope that is reassuring to others going through a similar experience.
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.