I was glad to stumble upon this forum. I am a 45 year old male from then UK. I feel a sense of relief to know that I am not alone in coping with disfigurement. Perhaps that is the only consolation in all of this. I think that unless a major campaign is launched to raise public awareness about disfigurement we are and always will be swimming against the tide. It's sad to think that, but alas I feel it's true. Of course there will be a small percentage of enlightened individuals around who will be able to empathise to some degree and not make the disfigured person feel awkward. But I fear the challenge of trying to live a normal life is intensely more difficult for a disfigured person than for one who isn't. In fact the difference is immeasurable. Some of you might be able to relate to being stared at, the expressions on peoples faces when they see you, the negative judgements, the exclusion, the ridicule, how they touch the parts of their own face relating to your disfigurement when they talk to you (are they checking to see that that feature in them is still "intact"?), how people avoid eye-contact as if you're someone who is repulsive to them. Some of you might also be able to relate to the fear of leaving the house, the anxiety that builds up when you know you have to face the world, it's like being a sitting duck, waiting for the inevitable. People close to me say that those negative thoughts are what cause the negative experiences to manifest in my day to day life. Not true. What happened to you the previous day will inform how you feel about facing the following day. It's not being negative, it's being realistic. Of course they don't understand that, but many of you will.
I experienced some trauma to my face 4 years ago. This affected the soft tissue around my mouth on one side and caused the cheek on the other side to sink inwards, giving me a 3 inch dent on one side and a hollowness to the other. Very unsymmetrical. Additionally I was born with a strange head shape and to add insult to injury ended up losing my hair. I have tried to "brave it" thinking that I am as entitled as anyone else to talk these streets, but day-dreams of a better life are always in my mind. Day dreams of living as a recluse often filter into my thoughts. Fantasies of living in a community where people are "in the same boat" fill many waking hours.
I have tried counselling and read many self-help books, but although well-meaning I think the cumulative reactions a disfigured person faces, can defeat many self-help books and strategies. We all have bad days and vulnerable days, for a disfigured person being out in public on one of those vulnerable days can be enough to get them back to square one. Not being able to express what is "normal human behaviour" for the individual can feel like being trapped and living a life that is joy-less.
I have tried "treatment" for my condition. But that too is filled with dangers and risks and for the most part is temporary.
I'm here guys, I would love to talk to some of you. I live in Bristol, UK near the English/Welsh borders.