how to approach someone with facial paralysis.

This post is going to be for those who know someone, a friend or family member dealing with any form of FP, with tips on what to say if you find yourself feeling a bit stuck. Maybe you don’t even know anyone who has it, but it’s possible that you could cross paths with someone with FP in the future, and feel like you’re not sure what to say to them without fear of saying the wrong thing or hurting their feelings.

First of all, it’s completely normal to feel like you may not know what to say, especially when you haven’t experienced what they’re going through. Whether it’s any sort of physical or mental illness or massive life change, it can be tough to know what to say. I can’t comment on exactly how everyone might feel as every case and person is different, but with this post I just want to put out what I’ve experienced in the past year and my feelings towards what has been said to me, to hopefully act as a general guide for anyone who may be struggling with what to say.

1. what’s happened to your face?!

I KNOW.

You’d be surprised but I’ve actually had this one quite a few times. It's only really come from people in shops and cafes, quickly followed by a free coffee or a discount off my purchase! I think they are definitely wanting to help brighten my day, and to be fair it’s when I have to wear my eye patch either in the beginning or after botox sessions, which automatically gets me lots of looks in public anyway, but every time I think...really?!

But rather than freeze on the spot or dive into the long old story and bore them, I simply go with ‘my face is paralysed’ which gets the message across. I personally don’t mind answering people when they ask me about it as I’m definitely now in a better space to share more about it and be more open, and they are genuinely interested if you’re okay, but I do think it could be delivered in a less direct way, just to make sure it doesn’t upset someone! Maybe instead of straight up asking ‘what’s wrong with your face’, ask the person how they’re doing, how their day is going or if there’s anything you can do to help them. You may find that someone wants to elaborate further, others maybe not so much, but keeping them comfortable is always the best way to go when it comes to something so personal. So keep your questions quite light at first if you’re not 100% sure, people will open up if they want to.

2. acknowledge their pain and progress.

I really like when people acknowledge how well I’m looking and how far I’ve come, so letting someone know this is a great way to boost their confidence! However out of experience, I would avoid comments like ‘you barely notice it’ or ‘you would never be able to tell’.

When you have long term facial paralysis you have to live with the tension and pain in your face everyday, the constant reminder that you’ve gone through significant trauma and even trying to do the most simple actions or expressions can cause a lot of discomfort and tension, even if everyone else can’t notice it.

So to say that you can barely see what’s wrong can sometimes feel like all the pain and trauma they've gone through hasn’t been acknowledged. For me, it’s a reminder that people can’t see how much pain I experience every single day, and this only adds to the loneliness that Ramsay Hunt has brought to my life. It reminds me that no one around me truly understands what it’s like to live with it, and how would they if they haven't felt it for themselves?

Whilst this is a completely harmless comment to make on one end, to someone in my situation it can actually be damaging to your mental recovery. Instead of saying something like this, I would suggest comments such as ‘you’re looking incredible’, ‘the progress you’re making is amazing’, you can simply ask how their face is feeling on that day just to acknowledge their everyday pain, this could mean a lot more than you think. Comments like these keep that positivity that you intend on giving but recognises the journey that the person has been on.

3. don’t stare.

AGAIN another really obvious statement to some but it’s a point I have to address. It’s mad to me that so many people actually just stare at you when you wear an eye patch?

You wouldn’t believe the amount of times that I’ve had to wear one, walk down a street and have so many grown adults just stare at you as they walk past. It honestly can make me so uncomfortable to the point where I don’t want to leave the house.

Wearing a patch is super uncomfortable on the best of days, it completely messes with your vision and depth perception and I have no idea what is going on around me on my right side, it can be a really jarring few days. For me it brings back some PTSD of when I was first sick so it brings up a lot of emotional pain and anxiety, so to have strangers stare and outright ask what’s wrong with my face can make it so much worse.

I know that people mean no harm and they’re just curious, but I would hate to think that if I were to stare at someone because of my curiosity, when their feelings are already heightened, that I would be causing someone so much anxiety and discomfort. So if you see someone walking down the street with any sort of physical struggle, maybe it’s best to just keep going and treat them as normal as you can, move out of the way so they don’t feel like they have to battle crowds, and remain considerate of other people's everyday struggles. Maybe when I do have to wear one I am more sensitive to it, but it just makes the whole experience even worse. I don’t know, maybe I’ll print a t-shirt saying ‘my face is paralysed’ to avoid all the weird looks and questions!

4. knowing when to listen rather than talk.

I always think it’s a really great quality in a person when they’re able to stop talking or thinking about how to respond to what you’re saying and just listen. It’s so hard sometimes to vocalise what you’re going through and I think that’s the case for a lot of people, so allowing someone the silence and time to get those thoughts and feelings out is much more beneficial to them than you can probably imagine. I’ve benefited most from the conversations with my family and friends when I’ve been able to voice my feelings and not be interrupted or rushed. When you have people replying before you’ve finished what you’re saying, it can be very off putting. For me it makes me want to wrap it up quickly as it’s almost like they’re rushing to finish the conversation.

So allow them that time to say what they need to say, you don’t have to worry about how to respond, I’ve found that when I really listen the responses are actually much easier to give, so allow silence and time whenever someone needs it.

5. relate something from your experiences.

As well as being able to listen, it helps someone feel much less lonely to hear similar experiences you may have had. They don’t have to be the exact same as of course no two people have ever gone through the same thing in the exact same way, but there are definitely elements from everyone’s life that can translate for someone else.

I was talking to a friend the other week and we were catching up about the past year and she was asking how I was getting on. After letting her know about the problems I had faced, she started to tell me about her struggle with an illness which isn’t visible to others.

I found this such a bonding moment for us, being able to discuss the similar struggles we both face everyday, even though the two are completely different, made me feel so much less alone. You realise that literally everyone has things they’re struggling with that you can’t see, so if you’re both open to talking about these things it can actually bring you some comfort and knowing that you’re not alone in how you’re feeling.

6. for my facial paralysis pals.

What's always important to remember is that regardless of how people say things or act, I've only experienced people close to me do it out of love and compassion, and that's the most important to remember. Strangers in the street may pass by and stare as they're curious, and others ask questions because they want to make sure you're okay. But the people in your life that really matter will only ever mean it out of love as they want to reassure you that you're still you, you still look incredible and give you support in the way that they know whilst you heal or live with something so life changing. And if someone does say something to you that doesn't sit right, you have every right to explain to them how that may affect your feelings. By doing this you're helping them learn and understand your pain, as well as make sure that they know how to approach the conversation next time. You're the one going through your experience, so if something doesn't sound or sit right with you, the best thing you can do is talk about it to make sure you feel at ease with everyone around you.

So hopefully these pointers can help you feel more comfortable approaching tougher conversations. Some of these may seem pretty obvious to you as what not to do or say, but you’d be surprised how many times I’ve actually experienced negative actions or questions in one year! I thought it was better to be safe than sorry by outlining what’s good to avoid, not only that, but it will help make whoever you’re with feel much more at ease and able to open up to you about their situation which is so important for their wellbeing and recovery.