how do you deal with the fact of meeting new people when you have facial palsy?

[charlesray]

I am a man of 23 years of Argentina with facial palsy from birth due to a tumor. I fully understand that this community is meant for people in UK but unfortunately I could not find a similar site in my country and even from other Spanish-speaking country.

I have noticed lately that when meeting new people sometimes they stare at my face and that makes me feel very nervous to the point of not being able to keep talking normally (I lose eye contact and look down). For people I see frequently sometimes I have the urge to explain about my condition. Sometimes I did that, but then I regret , because they end up feeling sorry for me and that makes me feel that I am different and makes me sad. So my question is how do you deal with the fact of meeting new people when you have facial paralysis?

[Chris-Essen]

Hi Charlesray,

Whether from the UK or not, I like to think the site/foundation was set up to help anyone with facial paralysis.

I'm 25 years old and have had problems with facial paralysis since I was 14. I have learned over this time that, when meeting new people, it's best to try not to think about it. What I do is, even when I see people stare perhaps a bit longer than usual at my face, I just ignore it. Why? Because this just happens to be my face now. Perhaps not quite as symmetrical as everyone else's, but that's just how it is. If I think about it and their possible thoughts about how I look, then I'll drive myself crazy!

So, and this is a good bit of advice in general, try not to worry too much about what people think. If they're curious enough, they'll ask why, and at this point you can plainly explain what happened. Try to think of explaining it like you're describing the colour of your eyes. Not a good or bad thing, just how it is. If you don't feel or act self-conscious about it, then others won't feel sorry/pity you. Trust me on this!

[frances_26]

I have had facial palsy since an operation to remove a turmour six months ago. People do sometimes take a second look, sideways glance but I try and remember that this is only human nature and it is not malicious. People I know don't always know how to react when they see me now as I look so different, they are embarrassed and don't know what to say. Once they realise that I am still the same person inside they relax. So I guess the thing to remember is that it is strangers ignorance if they behave oddly towards you. Try and ignore them staring a bit too long and if they do reject you or don't know what to say then remember it is their problem, not yours. Having said all that there has been a lot of progress around facial palsy. Do you have any medical support? I go to facial rehabilitation once a month and each month I get a new programme of exercises. They've also talked about using botox in some extreme conditions that relieve the condition (only under consultant's direction). I hope you can get some help and wish you all the best.

[charlesray]

Chris-Essen.Thanks for your advice. In fact lately I've had more free time than usual and I've been making the mistake of being aware all the time of the reaction of other people when they are with me. I do not know why I began to think so much about this but I'll end now because it's a nightmare. I will follow your suggestion and will do my best to not be aware of this and keep my mind busy and away from negative thoughts.

Frances_26. Thanks for your advice too. Six years ago I had reconstructive surgery (temporalis transfer of the muscle) and after that rehabilitation using electrical stimulation. I honestly do not recommend this procedure because apart from having almost no favorable results is was too intrusive and it left a scar on my cheek. I also heard about botox but I fear the possibility of damaging the unaffected side of my face.

Now I try to improve other aspects of my appearance, for example I have been going to a dermatologist and enhancing the skin on my face. I do it just to feel better about myself. But I also agree that accepting me as I am is the key.

[frances_26 in reply to charlesray]

Hi CharlesRay, Thanks for your advice about botox and surgery and I think I would rather stay as I am than risk further damage. As everyone and you say staying positive is the best way forward and doing things that make you feel better is important. Good luck.

[Mincy]

Hi, I've had bells for 5 months now and that's my biggest hurdle. Meeting new people, as they never knew you before. I experienced this today, and I couldn't be bothered explaining what was wrong with me. At rest it's not that noticeable but when I converse it's quite obvious.

I had botox last week as I have synkenisis. I'm not sure it's made any difference and to be honest with you I think it's made whatever symmetry I had in my smile somewhat worse.

My cheek just feels stiff and my eyelid is abit smaller. Very depressing, feels as if I have digressed.

So think long and hard about getting it done. My only comfort is that it will wear off after 3 months.

Good luck with ur treatment if you decide to go ahead with it.

[charlesray in reply to Mincy]

Could you tell me the results of your treatment with botox? I want to know what happened after what you said in the last post.

[rgk1]

Hi there, I am a current 3rd year student at Bournemouth University. I am trying to make a short film about facial palsy and bell's palsy, creating more awareness to people through individuals personal stories of the condition. I find your story really powerful and interesting thought if you were interested in taking part in my film then I would be very grateful.

If you would like to email me back [e-mail]

Many thanks,

Rosie

[Hidden]

Hi I have only just been diagnosed with my first episode of Bells I do suffer from horrible facial lesions and my child is disabled so I know what you mean about the stares. I just make a quick joke to break the ice. Something like life would be boring if we were all the same or it takes a lot of people to make a world!. People then relaxed . I agree with people when they say its human nature to stare. it's not intentional. I've had to carry my boy out of situations with the whole isle staring ok I wanted to die at the time but now I laugh..Least they know why he gets the extra help!

Blessings S

[Hamjack]

Hi Charlesray,

I was diagnosed with Ramsay Hunt Syndrome 9 days ago so have not met with many people in that time. That said, I am not hiding away as I believe staying positive and confronting the paralysis is the right way for me.

When I meet new people or people that have not seen me since my diagnosis, I tend to gauge how I think they will want me to react. If people stare then I tell them what has happened and find that they are usually very understanding. Sure they can feel sorry for you but it's not pity, is compassion and understanding so try not to let this make you feel embarrassed. Instead embrace it as a chance to explain and inform people so they better understand your condition.

I work in sales so I know I will be meeting lots of people very soon so my attitude is just to accept it and know that this is temporary and we will be fit and healthy again. The body will heal in its own way at its own pace so be patient and stay positive and strong.

[Cupkatech3rry]

Do most people's experiences of Bell's palsy find they return to normal... Cosmetically I mean.

I suffered from it 20yrs ago and my doctor said it would all return to normal, offered no treatment.

But I still have a half smile etc..

Just wondering. Thanks .

[charlesray]

Valdosta, sorry for not replying earlier but I´ve been having problems with my internet provider.I like the idea of using jokes to make it easier to talk to other people, I also believe that I have good sense of humor and that is very useful to deal with this. Now I am trying to change my thinking in regards to accept me as i'am and not be so critical of myself.

Hamjack, I like knowing that there are people in similar conditions and are able to carry out their situation. thanks for your advice, i take it as an example. As you mention that your case is temporary I hope you continue with your treatment and get better soon.

I want to mention that I've been trying to improve my poor social skills lately but as I mentioned earlier I still feel very nervous when talking to others particularly if it is face to face. I feel trapped in a circle because one thing is needed to improve the other. I mean if I did not feel uncomfortable when talking I could improve my speech and if i had social skills I'd feel more confident when interacting.

Since i'm tired of this (and after months i realized i can't get over it) I've thought the possibility of seeking help. There are actually many different therapies in my area and i don't know which one would be proper for my case. I would ask if someone has gone to a treatment and want to tell me about it. I don´t expect big changes, i just want to be able to communicate anytime without feeling uneasy.

[Kaykay8803]

Hey.

I'm so sorry you feel this way.

I myself am a very loud bubbly person I think I try to be so that peoples first thought of me is looking at her face. If I see someone looking I just say to them don't stare at me asks me and I will tell you. It makes them feel a little awkward and kind of takes the focus off of you.

Kayleigh

[Hidden]

Hi there,

I normally just tell them straight out that I have a problem with the facial nerve and after that it is up to them to deal with it LOL!