Living with a facial disfigurement - Changing Faces

Changing Faces

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Living with a facial disfigurement

Moebius
Moebius

I'm new here

Hi, my name is Em, I'm 24 and have a neurological condition called Moebius Syndrome, it paralysis the muscles in my face and makes me unable to make facial expressions.

This has made my life difficult , I've been in and out of hospital since the age of 3 months old due to being born cross eyed to have it corrected. I've missed out on friendships, and dating, I have and still do generally feel alone.

I hate being alone as it gives time to get inside my own head which at this point just feels like falling down an endless rabbit hole.

I'm just looking to meet and chat to people who understand me.

12 Replies
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younique
youniqueCommunity Ambassador

Hi Em! It's great you are here. Sorry that you've had these struggles. I'm 40 years old and was also born with my condition, so I understand being affected your whole life. For me it's very much been most challenging psychologically. So I can relate to your feelings of isolation and being locked inside your head. What has helped me is turning my thoughts into a respite rather than a place of darkness (but yes I've been down the rabbit hole too, many times.) I came up for air about ten to fifteen years ago when I realized that I was making my life worse through my frustration. We can be and deserve to be happy, just like anyone else. What makes you happy? What brings you joy? What distracts you or takes you away from your troubles?

Moebius
Moebius in reply to younique

Thanks for replying Younique, I really like to draw sometimes even that can leave me feeling miserable, especially if what I'm drawing doesn't turn out right. I've started attending the gym three times a week to give me something to do and somewhere to be.

I'm also into gaming, I love playing open world games. I used to write but have kind of given that up

younique
youniqueCommunity Ambassador in reply to Moebius

I know it's hard to keep up with the things you enjoy when you are feeling depressed. Sometimes I just zone out in front of the tv on those days.

Are you seeing a counselor? Therapy has helped me tons. Maybe you could find a support group in your area? This group is great too so I hope to see more of your posts!

Moebius
Moebius in reply to younique

Thanks to the NHS I've been on a waiting list for therapy for months, might just pay for it myself

younique
youniqueCommunity Ambassador in reply to Moebius

I found a therapist who works on sliding scale. hope you have the same luck. You can ask them if they will.

Hi Em, I hope you find some relief from the loneliness and this forum helps in some small way. Ive never found a way to deal with the isolating or the anxiety so let me know if you figure something out!

Moebius
Moebius in reply to Priestly6

Thank you, will do

I am sorry to hear of your hardship...this is a safe community, just joined myself..thank

you for your courage & for sharing, we can talk anytime if you feel like it..take care Moebius

Hollick
Hollick in reply to Hollick

I'm sorry I should of addressed you by 'Em'...

Moebius
Moebius in reply to Hollick

Thank you Hollick 🙂

Hi Em! Sorry that people aren’t missing out on your friendship. I think that a lot of the time people get rapped up in their own things that they don’t understand the effect it has on others, and if you feel like your condition was the cause then you might feel as if it’s a detriment but I bet you it’s also really cool and you’re like a Vulcan. I’m going to read some stuff about what causes it and I’d love to talk some more.

I’m 26 and my name is rue. :)

Moebius
Moebius in reply to Rue18

Thank you for your kind words Rue, it's very nice that your going to take the time out to research Moebius, that means a lot that you care.

If you have any questions about it don't be afraid to ask 🙂

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