For people who have had facial palsy from a young age, their friends will have become used to what they look like. However, even close friends may still remain unaware of the full psychological impact and the functional aspects of facial palsy. It is such a rare condition and it is not always easy for the person with facial palsy to share their true feelings, because they fear friends cannot possibly understand. It’s also very important to someone with facial palsy not to feel pitied, unfortunately there are still some people that worry facial palsy may be contagious, or that it affects mental ability, hence raising awareness of the condition is vital.
‘I have had a lot of recovery and even though I look fairly okay now and my facial palsy is mild, it is still there. I still can’t whistle, I still get tightness in my face and synkinesis, and I have to have regular treatment. People tell me things like ‘you just look as if you’ve been to the dentist’, which I find extremely annoying and upsetting because they have no idea what having facial palsy is really like.’
For anyone who suddenly develops facial palsy it can be devastating, but even more so for a young adult, for this is a time of new beginnings, a time when many young people are taking their first steps into new careers, commencing university, socialising more, and enjoying their new-found independence. One of the initial reactions for many when they suddenly develop facial palsy is to hide away from their peers and from the ever-present cameras in this modern world of social networking. This is a very normal reaction and friends can play an important role in supporting and encouraging anyone who is struggling with facial palsy.
‘When I was younger, my friends used to ask me to go clubbing with them. I was always too scared in case the bouncer refused me entry. (I worried my facial paralysis made me look drunk.) I tried to explain to my friends but I guess none of them could ever really understand.’
Those who have developed facial palsy later in life may experience profound grief for the face they have ‘lost’. As with other kinds of grief, one does not just ‘get over’ and ‘move on’ from it for good, or within a set time limit. Those who are born with facial palsy may also grieve for the face they should have had, or feel occasionally overwhelmed by the struggle to live with the condition, its side effects, or other people’s responses to them. Thus, a friend with facial palsy may experience a deep sorrow that is ever-present, and that, even if it becomes less acute as time goes by, may resurface strongly at particular key moments (such as family or other social gatherings and celebrations).
How can you help someone with facial palsy?
For some people, facial palsy is just a small part of their life, whereas others will welcome more support from friends. These are just some ways you could support someone with facial palsy:
- Inform yourself about facial palsy as a condition (this website is a good place to start!) so that you can anticipate and possibly avoid situations that might pose difficulties for them. (For instance: you might love going on windy clifftop walks, but inviting them to come along may not be a great idea if they can’t close their eyes properly.) Learn about the physical and emotional aspects of facial palsy.
- Be patient and prepared to listen if a friend with facial palsy expresses their sadness. There may be the temptation to quickly respond with, ‘Things are not as bad as you imagine’; ‘It could be worse’; or, ‘You should have a more positive attitude.’ These kinds of responses can come across as dismissive or belittling of the other person’s feelings, and are not particularly helpful. It is incredibly difficult to explain the way facial palsy affects a person, and while it may not always seem a huge problem to others, remember there are often invisible symptoms which you may not be aware of.
- Show empathy; try to put yourself in their shoes.
- Be careful not to patronise them. They are, after all, the same as any other person, apart from a facial difference.
- Find out about sources of support for those with facial palsy (such as online and offline groups and meetings) so that you can pass them on if it seems appropriate. It you do, however, emphasise that this is not because you don’t want to support them yourself, but because those with facial palsy often share experiences and understand each other in ways that those without the condition do not.
- Take things slowly, don’t push them into situations they are not ready for, but do encourage them to take small steps forward and to not hide.
- Be sensitive to how they feel about photographs; always encourage them to be included but talk to them about how you can include them in a way that is more comfortable for them.
- Find out whether there are other ways you can support them, such as accompanying them to hospital appointments. Even if their family seems to already be taking care of this, they might welcome someone different to go with them.
- Try not to be offended if they don’t always feel they can join in with all your plans, however good your friendship is.
- Pick the phone up and be in their life. Even if they choose to hide away, make every effort to keep in touch and show them they are important.
‘Soon after my operation, I met a former colleague and commented that I looked “like a gargoyle”. She immediately and very naturally said, “Oh no you don’t, you just look – cheeky!” It was a gift – it helped give me a new identity that wasn’t negative.’
‘I missed my best friend’s hen weekend. I felt so guilty about it, but I couldn’t face the spa experience and having to explain why I didn’t want treatments near my face. I also didn’t want to share a bedroom with strangers when I cannot close one eye properly. I wasn’t honest about how I felt, I didn’t really expect anyone else to understand and I feared my friend would think I was just making excuses not to come…’
‘One of my oldest friends vanished from my life after my operation, after knowing me for over 30 years. I have to assume that he couldn’t bear to see me anymore. It made me angry as well as sad, because it was as though he didn’t care enough about me to rethink his own attitudes to women’s appearance.’
Last reviewed: 26-10-2016 || Next review due: 26-10-2018