I have been lurking on this page for awhile but have not had the confidence to post until now. I was born with a rare cranio-facial deformity known as treacher-collins syndrome. Fortunately it was only a mild case meaning I did not require any surgery. However it has left me with a slightly odd appearance (i have small cheekbones so my eyes slant down, especially my left one).
Over the years I have found it very difficult to open up about my condition with friends and family, to the point that it has almost become a taboo in my mind. This has certainly emphasised feelings of repressed shame within me that have greatly lowered my self-esteem. It has led to feelings of being unloveable, ugly an outcast etc. and I believe contributed to me entering into a depressive phase. Recently I have been trying to love myself more and increase my confidence as I want to live a happy fulfilling life, regardless of how my face looks.
I was wondering whether any of you guys have experienced similar feelings of self-loathing and how were you able to overcome/manage them? I'm also interested to know how you tell other people about your facial difference, as in my mind it is always the elephant in the room and I want to be able to address it without feeling so anxious.
Kind Regards,
Teo
Written by
dafallyban
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Welcome to the community. It's great that you made the step to post here and that you are trying to love yourself, increase your confidence and live a happy life. Do it! I'm sure you can.
I don't know if my own experiences will be helpful, but I'll write some. I have a light facial paralysis and strabismus and this has put me deep into the well of low confidence, depression, self hate, etc. There are many things to do to go out of there, and the first one is to want it. It helped me to read stories of people with the same or similar issues. Not to compare myself with them, but to see it's possible. And wow it is. I saw the problem weren't my facial differences but my attitude. Changing that helped a lot. I also thought about my achievements, no matter how little they are. I focus on my passions, realising my face isn't a limitation when it comes to do the things I like. I also value the true beauty in me, how my best friend comes running to hug me when we meet, how grateful and proud other people are sometimes. That's a reflection of what's inside me, it's beautiful, so it means I am.
I can't say I have such good experiences everyday, and I've been lonely most of my years. But the proper people will come sooner or later and, in the meantime, there they are the passions or whatever you like to do, and yourself. Why not loving yourself? In the end, you are the person you spend more time with. That body of yours has carried you wherever you wanted, and it knows your pain, your thoughts, everything. It was hard for me to make peace with my body, but that thought helped me. It isn't my body's fault, as I couldn't choose.
Well, that's a summary of what I usually think about to feel better. I haven't mastered self confidence yet, but I will. You can too, and I hope this place may be helpful in such journey. Don't hesitate to throw a message if you want!
Thank you for responding to my post. Your kind and uplifting words have really helped me feel a bit better about myself. When I find myself spiralling into despair I will try and remember that I have a great deal to be grateful for. Your story and experiences give me inspiration so that some day I will be able to truly love myself.
HI Dafallyban,
Its great to hear from you! I hope you lurk no longer! Thank you for your amazing post, which must have been hard to write. The important part is you're here, and we're hearing from you. This is really great news.
I am sorry to hear that you have felt some sense of shame. You never asked to have Treacher-Collins. I guess for you that is just normal. Unfortunately that normal doesn't quite align with everyone else's normal.
But then you say "you are trying to love yourself more".
Good for you say I. Why shouldn't you?
Far from shame, you should feel very proud that you decided to step forward to write this! People like you, doing this, make me proud! If your sense of worth has taken knocks, it can be hard to realise when you have made some progress, but in truth, you did, right there. You wrote this, and pressed the Send button. The community now knows. You have told the world! You are stronger than you know.
When i joined this community, it was because of a man who had a type of cyst that made his face asymmetrical. Now, I don't have the same issue, but his message was "hey, stop the stare!". And for the first time, I felt like some guy who I've never met, but if I did I'd buy him lunch in his honour, spoke for me.
We can never absolutely know what life is like for you. But when you talk or write, we will read, listen and then begin to understand. We all have some issues somewhere.
As a 50 year old bloke, i can see that having gone through going from being a child to a man recently (you are 22 you say) cannot be easy given the T-C. Other lads will be going off dating and getting girlfriends, and you end up wondering "am i excluded from this?!", the answer is no. You will find your place in the world. Going from being a boy to a man is hard enough already!
But you have a toughness there you didn't know. You were brave enough to post this. And you've connected.
And that is worthy of the highest praise and respect. Keep in touch.
I do believe the transition from boyhood to manhood has been particularly difficult for me and you are right about seeing men my age dating/getting girlfriends has made me feel more like an outsider. Your kind words really mean a lot to me and have helped me feel a little less alone. I will certainly continue to interact with people in this community as I feel you guys have a better understanding of what i've been going through.
Hello dafallyban and welcome to the Changing Faces community. It's brilliant that you decided to post your thoughts here and share your experience. It sounds like you've had a really challenging time with your condition over the years and suffered with negative self-image and depression and the difficulty of talking about it even with friends and family. That must have been really hard for you. It’s so beautiful and positive to hear that you have been actively trying to exercise compassion and kindness toward yourself and hopefully, you'll find people to connect with and to share your thoughts with in this community. I wonder if you have developed any strategies you use to deal with other people's reactions? Perhaps if you have the time or energy, you could compare them with some of the tips in the Changing Faces self-help guides free to download from changingfaces.org.uk/advice... and maybe even offer some feedback?
Not opening up to others about my condition and how it makes me feel with my friends and family has been tough. I have a great fear of making myself vulnerable and thus tend to keep things bottled up inside, which in the long run makes me feel worse.
In terms of other people's reactions it's actually quite rare that anyone has outwardly asked me about my facial disfigurement (perhaps they want to be polite). To be honest I would actually quite appreciate it if people would ask so that I could explain it to them and put them (and myself) at ease. As it stands however, in my mind my facial difference is sort of an elephant in the room. This is especially the case when interacting with new people and makes it really difficult for me to relax into conversations, as I have a constant voice in my head saying 'i wonder what they think about the way I look?'. I really hope I can start to learn some tools to help me overcome these insecurities.
Hi dafallyban , I'm glad you've decided to post on here. Thank you for telling us a bit about yourself and your story. I can definitely relate to what you said about opening up to people about your condition. It always used to make me feel very emotional talking about my conditions, even to my family. I found it especially difficult as I entered my teens. I had low self-confidence and felt quite isolated.
Over the years I have gradually become more comfortable talking about them which I think is partly due to practise and also self-acceptance. I've found gaining confidence to be quite a journey and I wouldn't say I'm quite there yet even though I'm getting much better than I used to be. Loving yourself for who you are takes time but I'd say a good place to start is realising that you are so much more than your differences. There are so many aspects of you that make you who you are like your personality, hobbies or interests. They are just as much a part of you as the way you look.
I used to be the same and I still sometimes am in thinking that my appearance is the elephant in the room. I used to think I had to explain my conditions to new people I met. But one thing I've learned though is that it's not always necessary to address it, especially if this is something you don't feel comfortable doing. It can take a while to get to this stage but trying to continue as if you're no different to anyone else will help people see that it's only a small part of who you are. But like I said it's good to have that realisation yourself first.
However if you do want to explain it or people are asking you questions, I'd just go into as much detail as you feel comfortable with at the time. Having a short and simple explanation at the ready is a good idea. Like "I was born with it" or something like that.
I hope some of this is helpful. Just remember that you're certainly not alone with how you're feeling and you are not defined by your visible difference!
Take care😊
I was like that. The subject of my face was so taboo for me that even when my mother started talking about it, my throat tightened and I couldn't answer. I don't even mention talking to my friends.
How has this changed? Well - slowly. First, I met a girl on the Internet who had a similar problem. I was able to talk to her about it and learn how I want to talk about it, what I feel comfortable with. I once described my story on Instagram and in a podcast - paradoxically, it was easier for me than talking to my loved ones. Don't ask why, I don't understand it myself. Then a few close people contacted me and there was already a base to talk to them about it.
Now I am talking about it freely with literally everyone. When I meet a new person and we start to get close enough that I want they to know the story from my perspective, I somehow gently introduce the topic, trying to use an excuse, something that happened recently.
Most often people respond well and are happy to be able to openly talk to you about topics that are important to you. However, you need to be prepared that some people will not want to talk about it, they will feel uncomfortable and will cut the conversation with a joke or quickly change the topic. It's unpleasant, but it does happen sometimes.
Overall, I highly recommend working on the ability to talk to others about your face, because it changed a lot for me! I feel that my self-esteem has grown a lot from that, it's not such a painful topic anymore.
Hi and welcome,congrton the first step ,in posting about yourself (it's really scary) tbh the team of guys and gals here are absolutely amazing and have your back,if you ever need to talk about anything just hit me up,I was born with a cleft pallet whic left me looking different to everyone else ,this was in the early 70,s before we had a support network like this awesome place,I suffered for a long long while due to my looks etc
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Then a few close people contacted me and there was already a base to talk to them about it.
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