Some partners will have only known their loved one with facial palsy, whereas others will know the person ‘before facial palsy’ and ‘after facial palsy’.
People who develop facial palsy often experience profound grief for the face they have ‘lost’. It is not the kind of grief that a person ‘gets over’ and ‘moves on’ from for good, or within a set time limit. Like any kind of loss, the feelings of sorrow hopefully will become easier to live with in time. Those born with facial palsy experience similar feelings of loss, only for the face they should have had. Anyone with facial palsy, however well they appear to be coping, may occasionally feel overwhelmed by the struggle to live with the condition, the often complex side effects, or other people’s reactions to them.
‘My husband assumes I am okay because I have had this all my life. I guess he thinks I should be used to it by now. I torture myself sometimes, looking in the mirror at my good side, trying to imagine what I “should” have looked like, this other “me”, this person I have never met.’
Meeting someone with facial palsy
When you know a person with facial palsy well, the paralysis becomes less obvious; it is only when people’s faces are completely new to us that we tend to notice it more. This can make it difficult for a person with facial paralysis to introduce themselves to potential partners because they will always, on first impression, have a slightly unusual face. It can be tempting for the person with facial palsy to try and hide their differences by not smiling too much, but then this can come across as being unfriendly, which is also unhelpful.
Online dating is difficult for people with facial palsy because most people want to see a photograph, and photographs are not always easy for someone with a facial difference. In order to hide the paralysis they may hold a close-lipped smile in place, or have the photo taken from an angle. However, if they enjoy the company of someone who they are communicating with online and it is decided to meet up in person, this raises the question of whether they should explain their facial paralysis first.
Because facial palsy is so rare, it is not always easy for the potential partner to visualise what this means, which can be off-putting. It is important for the person without facial palsy to remember that once you know someone you tend to see past the paralysis and see the person as a whole. Many people with facial palsy are in happy relationships, with their partners reporting that they do not notice the paralysis.
A ‘change of face’
When a person suddenly develops facial palsy, their partner will also have to come to terms with this change and may experience a range of emotions such as:
- Feelings of sadness when seeing a partner upset.
- A feeling of relief (when established it is not life-threatening).
- Worries about the future, where paralysis is known to be permanent – not knowing how a partner will cope.
- Frustration that it is something beyond their control.
- Helplessness, not knowing the right things to say and how best to give reassurance.
- Most partners try to be honest and supportive, but it is common to feel somewhat powerless.
‘I find it frustrating how my partner thinks she looks much worse than she does, I don’t actually see any disfigurement. I find it hard to cope when she struggles with it.’
Supporting a partner with facial palsy
You can help support a loved one who has developed facial palsy in the following ways:
- Be there for your partner, listen and make time to talk, and overall, be patient. It’s impossible to imagine what feelings, or sensations (or lack of) they are experiencing, so do not feel you have to rationalise or make sense of things, sometimes all you can do is listen.
- Enlist the help of family and friends if possible: a good support network makes a big difference, especially when you also have children to consider.
- Support them with things like physiotherapy and anything else they need to do to make themselves feel better. Offer to take them to appointments when you can, and accompany them to the appointment if they want you to.
- They may feel that they should be able to cope better than they are doing, so try to ensure they give themselves credit for what they have been through, without sounding patronising.
- If someone asks about your partner, always be open and honest; tell people to talk to them normally and not to avoid them.
- When out and about it may be that your partner feels people are staring, even if you do not notice. Always keep things as normal as possible, smile and greet people as if nothing has changed.
- It may be that your partner does not always hear people (where the hearing has also been affected, for example, during acoustic neuroma removal) and you may wish to check whether they want you to point out if they haven’t heard someone.
- Help them research all the possible options that could help them, such as surgery, medical treatments, therapies, etc. and try to support them with any decision they make.
‘Although I often don’t believe my partner, I did find it very reassuring and appreciated it when she told me again and again that my view of myself was different to what other people saw.’
‘My partner sometimes gets more upset if I try to tell her she is still beautiful when she is feeling down, even though I really believe it. I have learnt that at those times it’s better just to say, “I’m sorry you’re feeling sad”, and hug and hold her instead.
Last reviewed: 26-10-2016 || Next review due: 26-10-2018