Joanna’s Story

Joanna, 49, had to wait more than a decade to receive proper support with her facial palsy. In the meantime, she suffered from depression, gave up her job, and her marriage broke down.

I lost my face fifteen years ago. I was 38 weeks pregnant with my third child and it was the last day of term. We had just moved house and it was a very stressful time.

I woke up with a strange fluttering sensation on the left side of my face. On the school run (we were late as usual), I felt it again – some kind of tingling, fluttering? About an hour later, when it happened once more, I also felt unwell and knew something was wrong. I went to a friend’s house and whilst she made a coffee my face dropped completely. I couldn’t drink and looked like I’d had a stroke. My face was numb.

I drove myself to hospital where I was admitted to the maternity unit. Five hours later a neurologist came and stuck needles in my face. I couldn’t feel a thing. I was sent home with steroids and told to get on with it. I wasn’t able to speak clearly, or close my eye, and the left-hand side of my face was numb.

Six weeks later I returned to hospital to see a neurologist – still with little recovery. I was warned that I could waste my time and money on any treatments I chose, but none of them would help. Eventually, I achieved about 80 per cent recovery and I was told that no more improvement could be made.

I became a recluse and buried myself into motherhood. I never looked in a mirror, avoided all but my closest friends and family. I refused to have any photos taken and worried that my baby would never learn to smile. At the same time I had a lot of pain in my left jaw, and after a dental visit I was diagnosed with a large abscess on my bottom jaw. The tooth was removed and so was the abscess. Eventually I had a titanium implant to replace the lost tooth.

I was unable to return to work. (I was a fitness instructor.) Most people told me that I looked fine, that it wasn’t really noticeable, and that the changes were in my head.

I adapted to the way I felt and looked, by avoiding eye contact, social events and family photos. My confidence went and I lost ‘Joanna’ – I was half the person I used to be.

I tried many treatments including acupuncture, facial massage, Caci (a cosmetic treatment using micro current, that claims to tone and lift facial muscles), Bowen technique (a manipulative therapy, with gentle rolling moves meant to promote body healing), but nothing really helped.

I spent the next two years praying every night that my face would come back. Eventually I gave up.

I received two years of facial massage at a hospital, but after no significant change I was discharged. They helped me give myself permission to smile, but I still couldn’t.

I tried to resolve what happened by myself and I felt like Bell’s palsy was a punishment somehow for being a really bad person. My marriage deteriorated and I had a breakdown. I took antidepressants and went to counselling. As my marriage continued to struggle, I completely fell apart.

One morning, an old friend called and told me to switch the TV on: there was an interview with a plastic surgeon and a lady with facial paralysis. I felt it was my story. The tears started running down my face.

I managed to get a referral to that same plastic surgeon. I have been a patient there for nearly four years now. It has transformed my life to finally be able to talk to a team of healthcare professionals (doctors, physio, psychiatrist), who listened to me and understood the problems caused by facial palsy. My treatment includes physiotherapy with massage and stretches; the monitoring of muscle activity helps enormously, enabling you to reconnect with your facial movements. Botulinum toxin injections have restored some symmetry to my face, increasing my confidence. The psychiatric support has helped me to acknowledge the loss of my face.

After my husband left, I suffered a relapse of Bell’s palsy on the same side of my face. Receiving immediate steroid treatment helped to prevent my facial paralysis from worsening and my treatment continues. I am much more hopeful about the future.