Living with facial paralysis

Hi, I'm 45 but lost the movement on the left side of my face 29 years ago. It has always been a huge issue for me and i have found myself in "awkward" situations many times. but on the whole i have got by and led a "normal" life.

However the last few years have been extremley hard because my bad side is dropping more as i'm getting older and it is very uncomfortable, and feels tight. Because of my illness (multiple Paragangliomas) my speech has got worse over the years so communicating with people is very awkward and i try to avoid it if i can. The fact that i can't smile properly is massive for me and i absolutley detest having my photo taken. if people say something about my face i get very embarrassed and don't know how to respond and just want the ground to swallow me up. After the event i always get angry with myself at not having a go at them or coming out with some smart reply that will make them feel small, but of course it's to late by then.

i'm worried about my future and that i'm going to become a recluse, but i'm so scared of "facing" the world. i don't know how to handle it anymore.....

4 Replies

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  • Hi Mary,

    Although I don't have facial paralysis I do have a facial portwine stain and it's a fact of life that people will stare/comment.

    However saying that, it doesn't make it right or acceptable. Some people with "issues" have the opinion that they should take the moral high ground, turn the other cheek and ignore the nasty comments directed at them. Good for them, I say.

    But I believe in challenging the opinionated oik's! Because, if they are not challenged, they assume it's ok to do this and do it to others. I'd suggest you have a stock of smart one liners to dish out if someone decides your an "easy target" just because of your paralysis. Forget being embarrassed! Remember you're just going about your business; THEY are the ones attacking you! Get angry about why they are doing this.

    I have the option of using skin camouflage creams to lessen the impact of my mark, which I do, regularly. However, it's not completely unnoticeable so I still get the "double take" (you'll know what I mean!). If someone is staring too much, just ask them "can I help you"? The staring quickly stops! Or just turning to pointedly look at "starers" is sometimes enough.

    Hope I have convinced you you're not alone and there are lots of us who have to deal with this kind of nonsense on a daily basis too. Good luck! :-)

  • Hi there, your comment did actually make me feel a little better. And i remembered a few years ago when i was in a pub with my hubby a girl sat just by us was staring at me for ages, i got pretty fed up with it and like you said, i looked at her and said "can i help you?" she said back, "well you were staring at me" !! Now, sometimes i do get paranoid that people are staring at me, but she DEFINITELY was!

    My hubby has been really ill this week, so i had to really pull my finger out and do all the running around he normally does because of my condition. I found i was struggling to cope physically, but mentally i had so much to do that i just didnt have time to worry about other people. So this has convinced me that i need to push myself and get out there and do more.

    I took my beloved dog to the vet on Monday and a woman commented how lovely he was, she asked how old he is so i replied " eight ", because of the damage from brain and neck tumours i have trouble with certain words and letters and my speech is quite low in tone, but "eight" is quite simple for me to say, but she just couldn't understand me! She kept replying "nine?" and i was like no "eight". It was soooo frustrating!!

    Thank you so much for your comment, i realise now that i have to confront my issues and if people dont like the look of me.......Tough!!

  • I completely understand where you are coming from. I was 22 when I got BP and now I'm 35 and I cant take it anymore. the looks the questions all bother me. I'm now thinking about having surgery or either trying Botox. I'm scared but I just want to look like I did before.

  • Hello Mary.........I have had facial paralysis from birth and I feel EXACTLY like you and TOTALLY understand what you are saying - I decided a year ago to get surgery and for the first time in my life I spoke to my parents and friends about my issues.........most have been very supportive. I had surgery coming up for 6 weeks ago now - a big 7 hour op which could do nothing for the nerve damage but has made my face more symmetrical with half brow lift and half face lift combined with fat implants...........it has really helped me so there is something that can give us a bit more confidence xxx

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