Diagnosis
One morning (May 2022) I woke up and my face felt weird, I was living away from home at the time so I FaceTimed my mam and she urged me to go to A&E. Explaining to her that half my face wasn’t working, her work colleague overheard and told her that I probably had Bell’s Palsy. Neither me or her had heard of that before, but within 30 mins of being at A&E I get that exact diagnosis.
I get given a course of antivirals, steroids, eye drops and short but not-so-sweet advice to look on the NHS website for advice about my new condition (one page long) and sent on my way. My face was semi-dropping by this time and within three hours of me waking up, I had started taking my medication. I got my clever flatmate to read all of the medication leaflets as I hadn’t been told much about what Bell’s Palsy is, what this medication would do and how this would affect me.
After Care
By the end of the day my face had fully dropped. Similar to stroke-like symptoms, my speech was slurred, half my face would not move no matter how hard I tried and I couldn’t look at myself in the mirror. My medical encounters from standard GPs were awful to say the least. The day I got diagnosed, the nurse miscounted/prescribed me the incorrect amount of medication (should have been 70 pills but only got 56). I spent hours on the phone to my GP in Sheffield. They claimed my A&E notes hadn’t been transferred over so they couldn’t give me the correct amount of pills. A lovely lady at the switchboard was the most empathic person I’d spoken to thus far, and managed to get a nurse who was due to finish her shift to prescribe the remaining tablets. Because my symptoms had gotten worse (semi dropped to fully dropped) she made me an appointment that day to see a doctor.
Off again I went to the GP surgery at A&E, got my blood pressure taken, a quick once over in my ears and outright told that I’d recover in two weeks. Myself, being a 22-year-old, newly diagnosed Bell’s Palsy patient, took this with a pinch of salt. Still to this day, I am very angry at that doctor/nurse giving me a lot of false hope. After one of the biggest breakdowns of my life, the harsh reality that I have yet another potential long-term condition (I have never had the best of luck when it comes to things wrong with me), the way I couldn’t talk, eat and had to tape my eye down for the foreseeable, hit me like a tonne of bricks. I quit my job, packed up my stuff and moved home (Manchester) for some much-needed TLC off my mam, step-dad and dogs.
Weeks later I managed to bag a follow-up phone call appointment with a doctor from Sheffield (I wasn’t registered to a GP in Manchester at this time). His lack of empathy, sympathy and dismissive ‘we can’t do much about it, you’ve got to wait and see’ speech left me feeling hopeless and rather concerned. Further appointments (now registered in Manchester) allowed me to see that GP’s really don’t hold much knowledge on Bell’s Palsy or anything similarly related. For months I frantically searched the internet on what this was, quick cures, what to expect, home remedies, all of which said something different. Then I found Facial Palsy UK.
Facial Palsy UK
The website was my God-given solace. The information, stories and videos have informed me more than any GP or website has. I began joining support sessions via Zoom, in which Karen and Vanessa allow each person to speak freely and give 1-1 advice/information about what individuals can do to help their own case. I got given names of doctors/specialists in my area, names of clinics that specialise in Facial Palsy and I got the support and empathy that I craved for months. I rang my GP, booked an appointment, and literally told the doctor who and where to admit me to. I feel disappointed and somewhat neglected that GPs don’t have a clue but grateful for the ladies at FPUK that allowed me to in a sense, demand and take charge of my own medical care.
Recovery
I didn’t get my first movement until three months. By this point my mental health had deteriorated, I was seeking counselling and on anti-depressants. My first movement was the smallest flicker in the corner of my mouth; I cannot express how happy I was. Over the months, my eye closure slowly got better, my frown lines became more prominent (something that I never thought I’d be so eager to have), my cheek began to move, a small unsymmetrical smile started to form and my speech got drastically better. Because of the long-term recovery time, I have since developed an inevitable complication called Synkinesis. Because of the information provided by FPUK and my hardworking research skills due to lack of knowledge from GPs, I knew exactly what this was. My face became tight and my movements started to link (e.g. when I raise my eyebrows I would involuntarily smile). It’s been immensely difficult and it still confuses me to this day ‘why me’ and how this even happens to people, but I know I am slowly on the mend, and realistically I have come to terms that my face will never be the same.
Treatment
Since my diagnosis I have received an MRI scan, a nerve conduction study and have started facial physio/rehabilitation. This took many months to see any neurology and facial palsy specialists, however I now understand that, as awful as it is, professionals do need to wait to see your natural recovery before intervening. Unluckily for me, mine has been prolonged.
Moving on
At six months, this was the pivotal moment in my life. I had been unemployed since my diagnosis, barely reached out to my friends, nor did I have any sort of social life and decided I needed to deal with reality. I began looking for work as I started to feel a lot better (mentally and physically) and began accepting my new face. I became distracted with work (didn’t have time to stare at myself in the mirror everyday), gaining income again and was a lot more social. Now (ten months post onset) I am somewhat at peace. Having had a few support sessions with FPUK and seeing faces similar to mine, began my physio, a lot more knowledgeable of my condition and visibly seeing the proactive recovery in my face, I am really trying to be confident. This will always be hard for me; I think I will always automatically point out that I have facial palsy to people I speak to and always be fearful of bad things happening to me. But I am also very proud of how I have handled the situation and how strong I am at my age dealing with something like this.
Advice
My advice to anyone with facial palsy (particularly my age group) is to reach out to your friends and family, gain that support, tell people you’re having a bad time and don’t take no for an answer at the doctors. Life is far too short to hide in the house for six months; I gave myself and my body a good amount of time to recover and heal but I’m now making up for the time I’ve missed seeing people, laughing freely without hiding my wonky smile and doing normal things people my age do. I think having facial palsy is such a traumatic experience but people with unsymmetrical smiles and eyes that don’t shut deserve to be seen too. Fake it till you make it and don’t let the thought of other people’s judgement kill your vibe. I want to share my story to let people know it’s okay to have a hard time being diagnosed with facial palsy and to never let something like this make you feel inadequate, unworthy or that you don’t matter (especially to medical professionals).
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.