Jacquie, 46, describes her experiences after being diagnosed with Bell’s palsy eleven and a half years ago. She would like to see more support for the children and families of those experiencing changes to their lives because of facial palsy.
It was a Friday, the night before my friend Karen’s 40th Birthday Bash. I can remember having a sharp pain in my ear and neck. The following day I noticed my eye was watering, I could not blink properly and my tongue felt tingly. I looked in the mirror and immediately noticed my mouth looked wonky, so I rang my mum in a panic. When she arrived she thought I had had a stroke, so she rushed me to the Doctors who diagnosed me with Bell’s palsy. I had not heard of Bell’s before and I remember the Doctor appeared to be very casual about it, he gave me some steroids and told me not to worry as it was only temporary and it would return to normal in a couple of weeks. I attended Karen’s 40th Birthday and had a fab time. Everyone thought it was hilarious as I was doing impressions, slurring and dribbling over everyone, as it didn’t matter because this was only temporary!
Weeks later there were no signs of any improvement. I felt the Doctor was useless and unhelpful and can remember being told, it just takes time as everyone is different and we all heal at different rates.
Months later, there was still no improvement. I can remember thinking that this wasn’t funny any more and I remember the horror of reality was starting to set in that this was now serious, there is no known cure and I was not getting better. I became very depressed, felt lonely and didn’t want to go out as my face was a mess. My eye was very large and didn’t blink and I remember it was so sore because it was either really dry or permanently watering. My mouth drooped and I couldn’t speak, eat or drink properly, but most importantly and noticeably, I’d lost my smile!
Six months later and still with no signs of improvement, my husband paid for me to go private as nothing was offered on the NHS. I went to hospital for some nerve tests. This was when I was told the nerve was severely damaged and that no nerve regrowth could be seen and that unfortunately the facial palsy would be permanent! It was from then onwards my life would never be the same.
I was now on anti-depressants as the depression got worse, and my daughter became anorexic. I didn’t care about anyone or anything and I really hit rock bottom. I felt no one understood, as everyone thought I was so brave and they could remember how I was laughing and joking around when I was first diagnosed. That was because the Doctor told me that it was only temporary!
It got to about nine months from first getting Bell’s when everything changed. I knew that I could not control the healing but could control myself and my future. I decided to leave my husband, I also lost my house and above all, I’d lost my smile! Things needed to change. I needed to change! I decided to seek counselling and help, none of which were provided on the NHS. This is when I had my first appointment at a neurological centre in the south of England, it was amazing and I finally had some support! I was given facial massages and shown exercises to help improve/keep the movement. These appointments continued every other month and I was also given information about counselling and Cognitive Behavioural Therapy (CBT). Things were really starting to change in my life, I started to become more confident, although I was obviously still very aware that I now looked different and couldn’t smile, but it was accepting my facial palsy that changed me even more.
Now for the good stuff! I met back up with Steve, an ex-boyfriend from before my husband, who continued to support and care for me and five years later we got married. I decided to return to education to further my career and six years later have gained many new qualifications including three GCSEs, an NVQ in childhood development, foundation degree in Childhood studies and a BA HONS in Education. I am now about to apply to do my Masters in Social Work.
I can honestly say that Bell’s palsy has changed my life dramatically and for the better!
It’s easy to say that if I didn’t get Bell’s palsy I probably would still be in an unhappy dysfunctional marriage, whereas now I’m in a happy healthy marriage, re-educated and looking for a new career. I do not think I would ever have had the determination to change my life for the better if I did not have Bell’s palsy, however I must add, I would never ever want to make the choice of having happiness with Bell’s or to have my old miserable life back but with my smile. I still dream of waking up with no facial paralysis and being able to smile. The dream of a miracle operation or cure is always at the back of my mind.
I have always tried to support others who have had Bell’s palsy, but when they see I have never recovered, I feel this makes them more fearful. I feel quite sad that actually people only want to hear that they are going to recover and the ones that don’t are ignored. I do appreciate that people need to be encouraged to rest and be patient until they recover, however I do feel that although I have been left with as much facial palsy as someone who has had a stroke, the support and treatment I received was nothing compared to if I had actually had a stroke. I posted the information about Facial Palsy Awareness Week on my Facebook page and although I know people will LIKE and support this, it is really hard to even begin to understand how someone with facial palsy feels. Most of my friends get upset when they have a spot/blemish or a cold sore, or have a bad hair day, let alone if they had facial palsy or a disfigurement. It sounds ridiculous but I’ve often thought I would rather have a limb missing rather than having facial palsy, that way I could hide it. That’s the problem with anything facial is that you cannot hide it, that’s why it is so hurtful that people can be so ignorant by making fun or staring.
Also I felt there was lack of support for my family. My youngest daughter doesn’t know me any other way so doesn’t understand why new friends ask “what’s wrong with your mum’s face?” whereas my eldest two children had to experience the diagnoses, the changes, the depression and the general taunting/name calling from other children. They had to experience their mum now NOT looking like their mum and dealing with the dramatic changes in everything in their life.
I was diagnosed with being left 54% paralysed on the Bell’s side and have over the past few years started to lose my hearing and my eye sight and now wear a hearing aid and glasses. Also in the last year I was diagnosed with obstructive sleep apnoea, where the paralysed side seems to be collapsing affecting my breathing. This now means I have to use a CPAP machine at night where I sleep with a full facial mask which forces open my airways. Without this I will stop breathing when I am asleep. Yet, Bell’s palsy is not recognised as a disability? It is an idiopathic disease, no known cause and no known cure. This all has obviously affected me and my family dramatically, however we are all determined to carry on and live life to the full.
I am not aware of how things have changed over the years for the newly diagnosed, regarding treatment and support. However, I would like to see support for the children and the families of those experiencing changes to their lives living with facial palsy. Obviously the treatment/support for Bell’s sufferers are paramount, but I feel that raising awareness to gain support for the families is as important.
I’d like to end by saying that my real friends do not notice and friends that notice, do not matter. From experiencing my roller coaster journey with living with facial palsy, I feel I am now a very positive person, who loves life and truly believes that you may not be able to control everything that happens to you, but you can control your own actions and reactions.
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: 30-05-2017 || Next review due: 30-05-2019