Being disfigured, lonely and misunderstood

Hello everybody

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.

14 Replies

  • Hello plk1970

    I totally feel for you as I've been there myself. I was born disfigured and it was a long hard journey in learning how to cope with people staring.

    Every day is still a challenge in its self but it can get better. Please let me assure you that I still get "the looks" when I go to town or somewhere different where people don't know me. I know it's not easy but things can change especially if you get some really good advice.

    I've private messaged you with more information that I feel might help.

    Please send me a line if you'd like to.

    All good wishes

  • Hi plk1970,

    I'm pleased to see you have already had a really helpful response.

    I have a cleft lip and palate and can relate to some of your issues.

    I'm currently doing some bodywork therapy to help deal with underlying trauma which is easily triggered by everyday stuff. This is really helpful, majorly difficult but I have a lot of support from my therapist.

    Also I have just started seeing a nutritionist to help with digestive and lack of energy problems.

    It's been a long journey and I am very keen to heal and be kind to myself.

    I have tried counselling but didn't feel that talking helped at all, certainly not if the person is unable to understand or help, big issues for me.

    I'm 55 BTW, based in Hitchin, north of London.

    Perhaps look on YouTube, Peter Levine works with trauma, I'm doing something less dramatic. You may find something of interest as you explore.

    I wish you well.

  • What an absolutely beautifully written piece.

    I've had bells palsy 4 times, which for those who don't know, is facial paralysis of either one side of the face, or in rare cases both, I have and continue to have, strange looks, especially when I laugh which makes it more obvious.

    I used to hide my face from people and avoid having photographs taken for many years, until I stumbled upon the most amazing charity (Facial Palsy UK). I went on to meet many wonderful people with similar conditions and the support has been amazing. I no longer feel alone and I now actively seek photo opportunities hehe!

    It really does help meeting people who know how you feel. Maybe there are some support groups in the Bristol area. It might be worth checking the Changing Faces'll meet local people, which would be great for you :)

  • Thanks for your post. I 'm in the same situation with feeling judge in society. I will pray for you.

  • I understand your situation. I will pray for you.

  • I understand your feelings. Thanks for sharing them <3

  • Hello Plk1970, you have received some very supportive responses and that is great. If you are not a member of the charity Changing Faces, who help people cope with living with a facial disfigurement, then please look them up online and see if they can help you. They helped me. You are absolutely right, all those negative responses from those outside of your home can make you want to disappear. But try and remember that you are bigger and stronger than this. You can cope with how people see you, because as soon as you change your mindset about yourself, others will see that it doesn't bother you as much as they might think it does. It is all psychological. There are excellent charitable people at Changing Faces who can show you how to begin this process of changing your approach, because at the end of the day, it has to begin with you. I think it is brilliant that you have made a first step in writing about your experiences, in effect you have begun the process yourself, now carry on as you are doing great!

  • Thank you for all for understanding. I will let you know what support I get and how I get on. It's good to know that many of you have found peace and have found a way to get on with your lives. Thanks again

  • Hi plk1970

    Thanks for your message and for reaching our to Changing Faces.

    We run a number of campaigns and programmes to achieve face equality. We want to create an enlightened society which fully accepts and values people who have a disfigurement. You can find out more about our campaigns on our website at, on Facebook and on Twitter at

    Our Support Service is also available to everyone in the UK, and you can find information at

    Changing Faces

  • Hello, thanks for your story first.

    it always fun to hears from others.

    well first, im not an 'expert', but its sure we cannot 'see' all without a picture.

    whatever, maybe i will sound a bit stupid, because i never had a big face changing situation;

    i only had a few surgeries years ago to remove a birthmark on my face, and had a small 'fix' in 2014 to improve the appearance.

    from what i learned; sometimes faces after surgeries/trauma/etc, can look weird .

    because it take years to heal, and then after full healing, you can start to see if there is 'irregularities' in the skin geometry ; scarring can make the skin fold or bump, and then it stays that way forever until it get a revision.

    an initial scarring , caused by any accident or etc, can always be 'revised' with time. ( after full healing ).

    the places that looks folded, irregular, etc there are ways to do skin geometry so everything settle down and look


    the same is for people who had more important accident; like having a gap in their face.... we can still take a skin part from their body, and fill the gap, and with special procedures and etc, the skin heals and after long time we can revise the thing and improve appearance.

    in resume, maybe some of ur scarring look odd , you might be able to see how it can be done to make everything look smooth, and fine .

    - franc

  • I agree with everything you say. I used to be one of the beautiful people. I wasn't average looking, I was stunning. But I was recently in an accident that resulted in a disfiguring scar on my forehead. Now my quality of life has been destroyed. I rarely leave my house. I would have rather overcome a serious disease than this horrible fate (as long as it didn't leave my face disfigured.) At least I would have had a shot at a normal life. And facial disfigurement is one of the most isolating ways someone can suffer because no one understands or cares unless it's on their face. I'm just counting down the days until my departure from this planet.

  • Hi plk 1970, my name is john, I'm from the Republic of Ireland, this is my first post on this site, 45 year old male as well, I was disfigured after a fight in a club one night in Ireland, it changed my life, I began to withdraw from normal life, no social life, would avoid friends and social events and became very isolated, and when you get into that sort of rut it's hard to change, since that event that left me with a serious scar on my chin and mouth area, I noticed people staring at me, I now suffer with depression and anxiety and I see a psychiatrist once a month,

    Life is hard when you are disfigured,

    I would like to get to know you plk 1970 and we can support each other, thanks for listening lads.

    Regards john.

  • Hello John. I'm really happy to hear from you and thanks for getting my weekend off to a great start! Of course I'd really like to be in touch to chat and support. I know it's a difficult road. So support is hugely important. You say "one night", but you didn't say how long ago this was. Just wondered if your journey through this has become even slightly easier since acquiring this change or if it is getting more challenging? I suppose I find it variable in my case. Some bearable days, other days not so good.

    John feel free to message me on this site, either as a continuation of this thread or if you prefer you can message me directly. I am away this weekend so please don't be offended if you don't hear from me until Monday or Tuesday. Just wanted to acknowledge your message before I left Bristol.

    We have loads to talk about mate. Speak/write soon : )

  • Hi John,

    I am also curious how long it's been since your accident. It's been over a year since an accident left me with a disfiguring scar on my forehead, and my life continues to spiral out of control. I used to be a happy healthy confidence woman with many friends, family, interests, and hobbies. But now I am a sad and lonely recluse. I have lost all of my friends, I have isolated myself from my family, I'm barely hanging onto my job (the only reason I have so far is because I work from home) and I'm almost completely housebound. I only leave with a hat on to run errands. Otherwise, I stay at home and mostly lay in bed. My mental and physical health is deteriorating and I'm getting closer and closer to calling it quits. I don't see an end to this hell.

    Have things gotten any better for you? Or have they gotten worse with time?

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