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?
Growing up with a facial disfigurement - Changing Faces
Hi Milan12 – 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...
Hi Milan. Do you want to talk more about yourself? Hope you can find some kind of support among us.
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
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.
I don't really talk to my family much about these things. I'm currently having psychotherapy so I talk to my psychotherapist.
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.
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.
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.
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.
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