Gaining the courage to smile - living with facial palsy

Growing up it was my my Achilles heel says teenager Maria Munir. This is how she sums up living with facial palsy – or facial paralysis.

For Maria, 18, there has never been a specific name or explanation for her condition, other than the term “facial palsy”.

“I wish someone would make more of an effort to find out what it is,” said the York university student. “I know there is not much information on facial palsy, but it still feels like they should pay more attention to it.”

Having had facial palsy from birth, Maria describes the left side of her face as “caved in”, as though someone has “scooped a bit of her face out” and she cannot move her left eyebrow and nostril, whereas her right side looks like normal.

Little things most people take for granted, like being able to smile, Maria cannot do – one half is smiling showing her teeth, the other side is not, which is why she is very conscious about smiling with her teeth.

Worries about her appearance have been a concern since she moved to the city to study politics with international relations.

She said: “I am very self-conscious about my face. I knew everyone from home and they knew me and what I have, but there is a greater capacity for people noticing my face when they are not familiar with me.

“I feel like university works the opposite way to how it should, regarding my blending in.”

Maria’s mother first noticed there was something wrong with her baby in hospital and told the nurses about it.

Although they initially told her it was nothing, she was referred to Great Ormond Street Hospital. Doctors there said she needed time to develop and she would recover, so they sent her away.

The first time Maria heard anyone attempt to describe her facial palsy was in 2005 when, at the age of ten, an optician thought Maria had Bell’s palsy, a common cause of facial paralysis which causes temporary weakness or paralysis of the muscles in one side of the face.

It was the first time anyone had ever tried to define her condition and the first time she had heard of Bell’s palsy.

Doctors have since told her however that this is not what she has.

“There are people like me who have no idea what they have.

“At least if it has a name, you can do something about it. I feel I have visited GPs so many times that now I am giving up.”

At infant school Maria recalls being the “eye-patch kid” or the “pirate kid”. It was at secondary school where Maria felt comfortable enough to explain her condition herself.

By 17, Maria’s facial palsy had improved. She now has braces which has given her the confidence to smile more.

“Smiling is a universal language. I am quite a cheerful person but when I try to smile at a stranger in the street, I feel like they look at me twice.”

Joining the support group Courage To Smile in secondary school was one of the best things she could have done, said Maria. The group aims to help those with facial paralysis come together and share their experiences and knowledge.

“We motivate each other,” she said. “You can go there and feel there are people who can help you. I would say it can be more informative than going to see a GP who has not experienced living with facial palsy.”

Maria has a strong interest in public speaking and is no stranger to being on stage. Her father used to be vice-chairman of the local Liberal Democrat party in Watford, so Maria has been involved in local politics from an early age.

“I want to raise awareness of facial palsy, be a walking advert in a sense. If I am doing something which involves helping others then this is a valuable point to me,” said Maria, who is also the campaigns officer for the University of York Liberal Democrats group.

“I would also like more people to be aware of charities like Facial Palsy UK which have the power to help people.

“It is about being able to give people the support they need. Charities and support groups can gear people towards some sort of life support, information and helping those that get lost in the system.”

She also likes to wear her Facial Palsy UK wristband as it gets people asking about it and she can explain what the charity is about.

Maria has mixed opinions about her facial palsy. Her parents have been very supportive and they see it as a blessing – as Maria points out, she could have been born with a condition which is much harder to cope with.

From time to time, it can get her down.

“I could deal with anyone saying something bad about my personality because I have the power to change it.

“Trying to make me feel bad about my face is low, because I cannot control that. This is why I stick up for people when they are being bullied.”

For now, Maria is content with the jaw surgery which she will have in the next two years. She knows this will alter the shape of her face and she is hoping it will make eating easier.

She does have her worries though.

“I do think ‘What if it fails?’ It is a bit disconcerting, what if I get another wave of facial palsy?

“I don’t want lots of things to change all at once because everyone notices your face. It has taken me 18 years to get to this smile.”

• Maria talks about her facial palsy on YouTube at: youtube.com/user/mariaaskswhy
 

Facial palsy: the facts

• Facial palsy generally refers to weakness of the facial muscles, mainly resulting from temporary or permanent damage to the facial nerve.

• More than 100,000 people in the UK are affected by facial palsy, with an estimated 20,000 patients affected each year.

• One of the most common causes is Bell’s palsy, although there are many other different causes.

• Alarmingly, a study in the British Medical Journal revealed that almost half of patients with facial paralysis have not received the recommended treatment that could prevent permanent disability. Treatment with the steroid prednisolone improves chances for complete recovery, however 44 per cent of patients failed to receive any treatment.

The support group Facial Palsy UK can be contacted on 0300 030 9333