The surgery that saved her life left Ali Sweeting with an unwanted gift: paralysis of the left side of the face. Although she’s receiving effective care and support and is gradually getting better, she never imagined the psychological impact of facial palsy would be quite so great.
Born in Glasgow, I moved to London after graduating and trained as a public sector accountant. I met and married my husband and we settled in Oxted, Surrey, with our two children, now age 23 and 20. After many years working in local government, I began working for myself as a consultant. I kept fit, running, taking part in boot camps and going to the gym: a fairly uneventful – and perfectly good – life.
Then, on St Patrick’s Day 2011, I noticed two tiny lumps on my jawline. Those two lumps were the first visible stage of a journey that has taken me to places I never imagined. It turned out that they were malignant, and I was diagnosed with cancer in the parotid gland (the largest of the salivary glands). The treatment prescribed was surgery to remove the tumours and the infected lymph nodes immediately below, followed by 30 sessions of radiotherapy.
Life became a whirlwind of hospital visits. The consultant maxillofacial surgeon explained at length what would happen during and after the surgery: my facial nerve would be severed during the surgery and I would have facial palsy on the left side of my face afterwards. My speech might be compromised, eating and drinking would be more difficult since my mouth wouldn’t work in quite the same way, and my diet might be restricted to soft food. My left eye would be sewn at the corner to reduce the exposed surface, since many people with facial palsy cannot blink properly and are at risk of corneal abrasion due to being unable to blink debris out of the eye.
I had no idea, really, what all this meant. Would I have benefited from being able to meet someone who had been through this, to get some idea of what I might be experiencing? I have to be honest and say – I don’t know; but I do think that it would have been helpful to have had the opportunity to speak to someone, even if I had chosen not to.
Facial palsy is, in my view, a deeply isolating experience. We form initial impressions of people based on appearance. Anything that makes us feel we don’t conform to the ‘norm’ undermines our confidence. My self-confidence took a severe bashing. I used to stand up and lecture classes of 30 students on a professional accountancy qualification. Yet now I felt so self-conscious I wouldn’t walk out of the house without wrapping a scarf around the lower part of my face. I would feel delighted if I could wear sunglasses to hide my mismatched eyes without it looking odd. While I am better now, there are still times when I have to steel myself to leave the house. For many months I wouldn’t do things on my own. I even convinced myself that I couldn’t drive anymore – purely because I had no confidence in my abilities.
I have tried to keep things in perspective. Unlike cancer, facial palsy isn’t life-threatening: it’s life-altering. But the difference is that no one needs to know that I had cancer. I have a magnificent scar running from my ear to halfway round my neck, but that doesn’t tell much in itself. Conversely, people look at my face and can tell, immediately, that there’s something not quite as it should be. It’s even more apparent when I talk or smile. It can’t be hidden, that’s what makes it so hard.
My face has improved and now, at rest, it looks much better than it did at the beginning. I can eat a fairly normal diet. What I do find odd is that I get food stuck up the side of my gum and can no longer just manoeuvre my tongue to dislodge it! I used a straw initially to drink but soon returned to drinking from cups, but I always make sure I use a thin-lipped mug or cup to avoid spillage. The loss of my left nostril, which is now permanently blocked, doesn’t make much difference unless I have a cold. It hasn’t stopped me running or exercising. My eye, after an initial period of over-watering, seems to be behaving well and I am lucky that my blinking mechanism is much better than expected, so in the near future my ophthalmic surgeon, should reopen it.
As a cancer patient, I was able to attend a Look Good, Feel Better workshop, where I was given a lesson in skin care and make-up. It taught me some clever tips for applying make-up to enhance what I look like and reduce the impact of my differently sized eyes. These are only open to women cancer patients, but they could be of real value to facial palsy patients, men as well as women: just because our faces are wonky doesn’t mean they can’t look nice.
I also found it incredibly helpful to return to exercise as soon as I had sufficient energy and stamina to do so. It made an enormous difference to my psychological and physical well-being.
Since soon after my operation, I have been seen regularly by a speech therapist who specialises in facial palsy and works closely with the plastic surgeon I’ve been referred to. With a combination of facial massage, facial exercises and trophic stimulation (electrical stimulation of the muscles), I have seen improvement. From my experience, it’s essential to persevere.
Facial palsy can be very isolating but fortunately I found a facial palsy support group, which meets every four months. It’s an environment where I feel totally safe and secure, knowing that people will understand what I feel, may have experienced the same feelings and will share advice. It’s where I don’t have to explain, or apologise for having a wonky face. I am incredibly lucky to have this facility on my doorstep – as well as the specialist unit where I have been looked after. I know that many others don’t have access to any support or specialist medical care without having to travel hundreds of miles. That’s why raising the profile of facial palsy and its effects is crucial.
What do I wish I had known before all this? That there are many other people with facial palsy and that we all are trying to find ways to adjust to it, exploring surgical and other options. I also wish I had known that the psychological impact would be quite so great, although of course I can’t easily separate the impact of having a life-threatening disease from the impact of facial palsy. I wish I had realised just how very much I would miss being able to smile properly. I wish I had realised the truth in what my family and friends kept – and still keep – telling me: that they don’t care what I look like and that they are used to my ‘new’ face and don’t remember me looking any different.
I sometimes feel I should make a badge that said, ‘Just ask me’, because I know people are looking at my face and wondering what has happened. I haven’t done anything to cause my facial palsy. I have no need to feel ashamed of my face. And yet… unless and until we can raise awareness in the wider population and amongst healthcare professionals, I suspect facial palsy will keep feeling like our dirty little secret.
Yes, I hope that treatments continue to improve and develop. But the big challenge is changing attitude – firstly, for facial palsy to be taken as a serious matter with huge physical and psychological impact, so that funding is made available for research; secondly, for the ‘general public’ to be aware that having facial palsy isn’t infectious, is not caused by lifestyle choices, and doesn’t make us less valuable as human beings; and thirdly, for us patients to realise that having facial palsy doesn’t have to mean we can’t play a full part on the world stage.
We’re still people. We’re just differently faced.
Alison has been involved with Facial Palsy UK since it’s inception in 2012. Alison was a Trustee of the charity from 2013-2017 but remains an active volunteer since retiring this post. She speaks at events about the work of the charity and also undertakes fundraising activities.
- September 2012: Prima magazine– Ali Sweeting talks about facial palsy after cancer surgery.
- 24 March 2013: South Cotswolds Gazette – A cancer survivor’s ongoing struggle.
- August 2013: Ridge Radio – interview
- March 2014: Essentials magazine – Trustee Alison Sweeting describes her experiences of facial palsy and salivary gland cancer, and also her work with the charity.
- 23 March 2015: London Live – Alison Sweeting talks to London Live about Facial Palsy Awareness Week.
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: 03-08-2017 || Next review due: 03-08-2019