What it’s like living with Bell’s Palsy at university

Bell’s Palsy causes temporary paralysis of the facial nerve, causing muscular weakness on one side of the face.

Lily Robinson, a third year English student at Cardiff University has had Bell’s for almost 2 years. She recently appeared on the TV show Never Seen a Doctor with Katie Piper.

We at the Tab Cardiff interviewed her about her condition, and how it has affected her life.

When did you get Bell’s, and how did you notice it?

“I got Bell’s palsy on the 22nd of September 2014, the day I came back to uni to start 2nd year. 

“I had severe pain behind my right ear and down my neck whilst eating breakfast, and again whilst eating lunch. That evening I was talking to my best friend and I started slurring, which was weird as I definitely wasn’t drunk.

“My friend freaked out and thought I was having a stroke, so my medic housemate had a look and said he thought it was Bell’s, and the doctor at A&E confirmed as much the next day.”

Pre-Bell’s.

How long have you had it? What are the symptoms like?

“I had it for about 4 months before it started improving. However, the paralysis kept coming and going for around 4 months after that. Then it came back again completely, and for the past year I’ve been steadily recovering.

“Sometimes I get tingly sensations behind my right ear, and my face can feel tight if I’m sleepy or stressed. The affected side of my face is always painful to touch. It feels like it’s bruised all over, which is a common symptom.

“The worst part has been the physical effects on my eye, which didn’t blink or close due to the paralysis. It was either extremely dry, which made my eye feel like it was being scratched with glass, or it was really watery which meant my vision was fuzzy. I spent a lot of time not being able to see properly, or do things like wash my face without it becoming an ordeal.”

11 months.

Has it impacted your confidence? Or your university life?

“I lost a lot of confidence when I first got the condition. It’s really horrible not being able to smile at people, and I could tell people noticed. I felt like I needed to tell them all about what had happened to me in order for me to feel at ease.

“I didn’t realise it at the time, but my uni life was suffering. My marks were a lot lower than usual, and I missed the majority of my lectures that first semester.

“However, it hasn’t been completely isolating. It’s really surprising how many people I met who were fascinated by it. This made me realise that people didn’t really care what I looked like.

Lily and some of the Pole Committee.

“I’m still able to do Pole and I’ve had the confidence to be President of the club for the past year. The Committee and members have been amazingly encouraging and given me so much support.

“What helped me through a lot of the dark times was the decision to be proactive. I tried numerous different types of treatment, and I’ve helped raise awareness about the condition by partaking in Katie Piper’s Channel 4 programme ‘Never Seen a Doctor’. Ignore the misleading title…I have seen many different doctors, I just didn’t get referred to the right one!

Filming with Katie Piper. 1 year.

“The result of this was getting my eye operated on. They put a platinum weight in my eyelid to help it close, and it’s worked wonders! Besides having a very expensive eyelid, I can now shut my eye completely, and blink!”

14 months. Post-op.

What’s your prognosis?

“No one can tell if I’ll make a full recovery as they don’t even know what caused it, but I’m really happy with how far I’ve come over the past year and a half.”

What would you tell someone suffering from the same condition?

Look at that beautiful smile. At 20 months (taken 2 weeks ago).

“Bell’s Palsy is a horrible condition, and I wouldn’t wish it on anyone, but for those people who do suffer from it, then don’t put your life on hold because you feel down. People don’t care as much as you think they do. Share your experiences with people, research and pursue treatments as you never know what’s going to work for you.

“You can still walk, run, think and do everything that you did before, you just have to do it with half a smile.”