Cathy experienced a lack of knowledge from doctors when she was affected with Bell’s palsy.
Before Bell’s palsy struck.
I was diagnosed with Bell’s palsy in August 2023 (aged 62). I was aware of the condition but had no idea that not everyone recovers fully! Eighteen months down the line and I realise I am one of the unlucky ones! I feel that I was given misleading information in A&E on the day I was diagnosed. I was given an information sheet to take home which included exercises, which I was led to believe I should start doing immediately. It said: ‘Exercises can be useful to tone the muscles as the movement begins to return’, but I just remember the doctor saying: “Here are some exercises for you to do”. My mistake, but I didn’t know any better at the time. I fear that me forcing movement from day one has had a detrimental effect on my recovery and I now have severe synkinesis. I believe the instructions could have been clearer.
I was also told in A&E to use micropore tape to keep my eye closed overnight, but six months later, when (thanks to Facial Palsy UK) I saw a specialist plastic surgeon, he told me to stop doing that as it can cause skin irritation and loss of lashes. He recommended Glad Press ‘n’ Seal, which was much better! It would be so much better if all medical professionals were giving out the same information!
After Bell’s palsy struck
Another example of doctors’ lack of knowledge/understanding happened in August 2024 when I feared I was developing Bell’s palsy on the opposite side of my face, as I was experiencing exactly the same pain behind my ear as I had had a year earlier. I went to A&E to ask for steroids but was turned away. The doctor I saw seemed clueless and had clearly Googled ‘What are the chances of getting Bell’s palsy a second time’. She admitted that she didn’t know that a pain behind the ear was a possible symptom – and she had never heard of synkinesis! When I asked her what else could be causing the pain she just smiled and shrugged her shoulders! In this instance it turned out to be shingles which erupted four days later!
As for how Bell’s palsy has affected my life, it is fair to say it has completely ruined it! Well-meaning friends and family are constantly telling me I look fine and they can’t tell any more, but they have no idea how debilitating and totally life-changing it is. I have no movement on one side of my mouth, so I still have problems talking, eating and drinking. I have to physically open my mouth with my fingers before I bite into anything. One of the most upsetting things for me is knowing that I have lost my smile forever. I can force my mouth to make a fake smile (with my mouth closed), but it’s definitely not MY smile and synkinesis makes me look and feel like a freak if I genuinely laugh out loud – not to mention how uncomfortable it feels.
Cathy now lives with synkinesis
The best way I could describe it to those who have never experienced it would be to say imagine how you would feel if someone slapped you in the face every single time you laughed or smiled! Eventually you would avoid situations where you might find something funny. That’s how I feel all the time. I find myself putting off meeting up with friends because the chances are we would end up laughing and that’s no fun these days. I recently went to a stand-up comedy show but found the whole evening exhausting as smiling/laughing is just so uncomfortable. Bell’s palsy has sucked all the joy from my life. It completely spoiled my enjoyment of my son’s wedding last year as I was so self-conscious about my face and I look stupid on all the photos.
I also have terrible problems with my eyes. I have constant blurred vision and need to use drops every 20-30 mins despite being told at my last eye clinic appointment that my eyes look healthy and the punctal plug I had put in several months ago is doing its job!
I also still experience discomfort behind my ear – I couldn’t lie on my affected side for a year. Botox has helped to alleviate some of the pain, but it’s just one of the many, many things that no-one else can see. People often say to me: “It could be worse,” and that is very true, but I wouldn’t wish facial paralysis on anyone. I might look OK to outsiders but believe me, it’s on my mind 24/7 – it’s the first thing I think about in a morning and the last thing I think about at night.
I would really like to thank Facial Palsy UK for helping me to get a referral to a specialist clinic in my area, and thank you for answering my queries when I couldn’t face joining the various support groups in the early days.
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.