Growing up with a facial disfigurement

I'm new on here, so this is my first post. Firstly, I just wanted to say hi. Secondly, I was wondering how people have found life growing up with a facial disfigurement. Unfortunately I have a lot of mental health issues due to my facial disfigurement, therefore have found life quite difficult and upsetting. Has anyone else experienced this?

[Hidden]

Hi Hidden – welcome to the community, it's great to have you here! I’m sorry to hear about the struggles you’ve had with your mental health and that you've found life difficult and upsetting. I know that there are lots of people in our community who can relate to what you've just shared. Hopefully you’re able to connect people with here and receive some support. In the meantime we do have lots of tips and tools for improving mental health and wellbeing on our website- you can find them here changingfaces.org.uk/advice...

Take care

Tiffany

[Hidden in reply to Hidden]

Thank you for the link

[MTTA]

Hi Milan. Do you want to talk more about yourself? Hope you can find some kind of support among us.

[Hidden in reply to MTTA]

I was born with a facial disfigurement from a condition called Cystic Hygroma. My airway is partially blocked so I have a tracheostomy tube as well to help me breathe. I've always hated the way I look, so I have low self esteem and have self harmed on and off since I was nine years old. I am very much a loner and have been all my life. People don't seem to want to be my friend. I couldn't eat very well when I was a child so I have a gastrostomy tube in my tummy to use to feed me. I eat through my mouth now, but it's still difficult at times. Just a brief summary. Hope this helps

[MTTA in reply to Hidden]

Do you have support from family or a close one you can talk about your feelings? I found that the more we talk about the more we get relief for our suffering. I can only imagine how hard life must have been for you.

[Hidden in reply to MTTA]

I don't really talk to my family much about these things. I'm currently having psychotherapy so I talk to my psychotherapist.

[Cat2005 in reply to Hidden]

Hi Milan. I'm so sorry to hear of your struggles. I also have mental health issues because of my facial disfigurement and I also don't talk to my family about any of this. Unfortunately, when families have never experienced anyone with a facial disfigurement they don't seem to know how to approach it and mine just pretended there wasn't an issue. My Dad tried to talk about it when I was moving up to high school and he was evidently concerned at how I would be treated, but, he did it in such an indirect, abstract way that it just increased the stigma of talking about it. As a result, I don't know how to talk about my situation and feel like I have a tremendous weight upon me that I can never shake off. I hope one day I will be able to accept myself and I hope things get lighter for you. Keep talking to you therapist because it's got to be helpful to have the opportunity to talk to someone.

[Hidden in reply to Cat2005]

I'm sorry you've had mental health issues too. I understand how you feel. I suppose people don't understand because they don't have experience with it themselves. I hope things get better for you as soon as. I think accepting yourself is a big part of making things easier. I need to do the same.

[younique]

Hi Milan12, welcome to the forum. What a challenge it's been for you. Yes I, and many others here, can relate. I think having a negative emotional reaction to a visible difference seems to be the norm. It does not have to define us though. Having a psychotherapist helped me, I hope it's helping you too. I am no longer in therapy so I am pretty active in this support group.. it helps. Everyone is very warm and accepting. Sometimes I feel like I obsess too much on my problems, so expressing my concerns seems to make a big difference for me. I hope it helps you too. I always encourage people to participate but I know it can be hard when we have had such difficult emotions surrounding our difference for so long. And many of us don't even know how to talk about it because we are used to holding it in and internalizing our experiences surrounding our difference. Talking about it with a community of people who share my concerns has been very beneficial for me. I used to feel so isolated and alone. I don't anymore. I know that my feelings are valid and normal. It's ok to be upset about things that are upsetting. Getting negative reactions from people can be upsetting, anyone would feel that way. So I think it's important to know that it's ok to feel how you feel. And it's great that you are actively trying to improve how you feel. Learning how to cope with our emotions seems to be essential to our overall wellbeing. I genuinely think that's the best we can do. ❤️ We may not be perfect but we don't have to be perfect to be happy.

[Hidden in reply to younique]

What a lovely reply. Certainly true. I understand what it feels like to feel alone and isolated. Yes, psychotherapy is helping and I'm starting to understand that a lot of things I don't like about my life is down to my facial disfigurement. I will certainly work on my emotions and learning to be kinder and more understanding towards myself.

[misstiee]

Hi Milan, I am new here too and i can really relate to your struggles. I was born with a haemangeoma on my face which has caused me to be disfigured on the side of my face. I also suffer from mental health issues due to this and life is difficult. I was always told that once i turn 18 i wont have it anymore but i do. Its exhausting trying to cover it with make up or my hair every single time im going out the door of if a friend is coming over. I am unable to be my true self which is soul destroying cos if i cant accept what i have on my face the how could anyone else. I really understand what you are going thru mentally and would love to chat about things if you ever need to. Take care x

[Hidden in reply to misstiee]

Hi there misstiee and welcome to the community. Thank you for sharing so honestly about some of your struggles. It sounds like things have been really hard for you… It's good that you're sharing your feelings and looking to connect with others here. I hope you'll find this forum supportive! You may also want to check out some of our self-help resources, that may offer some help with looking after your mental health and wellbeing, you can find them here changingfaces.org.uk/advice...

Take care

Tiffany

[misstiee in reply to Hidden]

Thank you, this is the first time ive been able to to talk about it so i am grateful for this platfrom

[Hidden in reply to misstiee]

Thank you for your comment. I am sorry to hear that you find things difficult because the facial disfigurement. Thank you for your invitation to talk when I need to. I offer the same invitation to you too. I understand the need to hide the disfigurement. There is for more to you than the disfigurement it's not who you are completely. I have never hidden my face away, and people do laugh and stare, but I let them. It still hurts at times, but I try not to dwell on it. Do you have friends? Feel free not to answer that if you don't want to.

[misstiee]

, you are braver than you may know. I wish i could see past it but i dont think i ever will, no matter who or how many people could tell me im beautiful i never believe it its ridiculous that i let it rule my whole life, i pray one day i will believe it . I struggle so much even just talking about it the thought of someone commenting on it makes me feel sick, good on you that you dont dwell on it and you shouldnt... niether should i. I have a few close friends thats ive has since school but i keep everyone at arms length and dont like meeting new people i push them away, Ive realised now i cannot go on like this life is too short. Thank you for your words and its true your disfigurement is not who you are completely. We are human just like everyone else and shouldnt have to feel like crap over something we cannot do anything about. I really appreciate the message back and the time, thank u

[Hidden in reply to misstiee]

Thank you for your kind words. I understand, I'm the same. I think I'm ugly and no matter what anyone says to me they've never changed my mind. You're right, life is too short. The more you let the disfigurement rule over you, the more it will dictate your life thus increasing the effect it has on you. I know it's difficult to not let it rule over, and sometimes I need to take my own advice with these things. I think we both need to accept how we look and stop really on others to accept the way we look, because that won't happen until we've accepted ourselves first. I'm glad you have a few close friends, at least you have someone. I have a few friends too, about five, but I would like more. Aren't there any treatments available that would help?

[misstiee]

Hi Milan,I really appreciate your words and what you are saying is so true, honestly its been like a breath of fresh air chatting with you speaking words I've never said before so thank you for that. I'm sorry its taken me so long to reply my anxiety just keeps creeping up on me. How are you doing? I hope all is well with you and that life is being kind to you.

I am unsure of any treatments as I've not mentioned my haemangeoma to the doctors but speaking with you and also listening to everyone's stories it has truly given me the confidence to speak with professionals.

I am glad to hear that you have some good friends around you you are truly lucky, I would also love to have more friends

[Hidden in reply to misstiee]

Thank you. I'm glad you've enjoyed talking to me, and that it's helped. Don't worry about, I understand about anxiety. What are you anxious about (if you don't mind me asking)? I'm glad it's given you the confidence to speak about it with professionals. What did they say? Thank you. A few friends are better than none.

[Gem1233]

I just want to say you’re amazing and strong !!! I’m new here too and can completely relate to how you feel.

[Hidden in reply to Gem1233]

Thank you for your kind comments. It's nice to know that someone can relate to me.

[Gem1233 in reply to Hidden]

Makes such a difference doesn’t it !

[pianopoet]

I’m new to having a facial disfigurement and could never have understood how it felt before. Now that I do, I find my family and friends struggle to understand the loss, pain and difficulties it brings. It’s a part of having something that very few can empathize with. I can’t make anyone understand unless they have walked in my shoes. So rather than try, I am finding myself internalizing my emotions and reaching out to those that do have my experience, like yourself. All of what you have said rings true. But I want to live, love, create, enjoy each beautiful day and the gift of life despite it. I hear this in your messages too and it’s because we are NOT our differences. We are our souls, our hearts and our spirits. We are not the flesh we live in; what resides inside is who we are!