Persimum, I think it must be worse for your DS than me, even though we have so much in common, because I never fear that I might be physically assaulted because of my looks when I'm out and I'm sure that's purely because DS is male and I'm female. But it's so wrong. How on earth can somebody feel they want to beat up another person simply because of the way that other person looks. There is something clearly very wrong with the mentality of assailant in that case. Perhaps they are reacting to some primeval instinct like animals who attack the weaker members of the pack, not that your DS is weak in any way, but he is percieved as weak probably because he lack of self confidence is sensed by these bullies.
I hope your DS will consider something like karate, I think it is a very good idea, and having some cutting retorts practised in his head for rude insensetive people. I have a few in my head but need to practise them out loud, I don't want to be caught lost for words like I usually am by people's lack of tact and sensetivity. I dread things like going to the GP. I never go about my eczema anymore as they have no solutions, but if I have to go about something else, entirely unconnected, more often than not I will get a very tactless comment from the GP about my eczema or a comment that the GP seems to think is funny but that I don't find funny at all. Do people honestly think that I find having this horrible, disfiguring eczema all over my face funny and that I will laugh along at a joke made about it? The stupidity of some people is just astonishing, and this is a GP who should surely have developed some sensetivity to people's problems since he must be dealing with them every day.
I can relate to the secrecy as well. Like you going off to secretly use a sunbed, I used to go off and secretly seek alternative therapies. I used to come home with various concotions to brew and drink and I find it amazing that my mother never once asked me where I'd been or what I was drinking. I could have killed myself as I know now that some of these alternative practitioners are unregulated and can be dangerous. But my mother never showed the slightest bit of interest or concern about what I was doing. My dad washed his hands of trying to help me in any way after I flatly refused to use the steroid creams etc that the doctor offered me. I knew they were damaging to the skin and did not provide a cure at all and I oreferred to try and find the root cause of the eczema and tackle it that way. Once I made it clear i didn't want to use steroids, my dad just left me alone to rot, he wasn't interested in supporting me with finding a treatment I felt comfortable with. I felt he just got fed up of me and my eczema and couldn't be bothered with me anymore.
You talk about your DS feeling so low he might have considered killing himself. Me too. But at least you, as his mother, had some awareness that he was feeling like this. My parents had no idea. I had even fixed a date in my mind when I would do it, but in the end I didn't go through with it. I just felt so alone with my problems. I had my parents, I was still living at home, and yet I have never felt more lonely and miserable in all my life. My mother made no attempt to even talk to me, to get to me open up. At least your mother tried to help you. Your DH saying he never knew a mother could be like yours again is something I can relate to. Not unfortunately from eg MIL being caring towards me, but just seeing and hearing and learning how other people's mothers will move heaven and earth and make huge sacrifices to help their child. My mother couldn't even simply talk to me, or listen to me. I am sure that even though talking wouldn't have cured my eczema, just being able to tell somebody who cared about how it made me feel, to share the burden a little would have meant so much to me. Surely that's what a mother is for, and that's why you should be so proud of yourself for being there for your DS2, because not every child has a real mother like that, your DH included. .
I have given up trying to understand my parents. It is futile. I might have their DNA but I am a completely different animal to them with a completely different way of doing things and I will never understand them and their ways.
The aspect of this that hurts the most is my sisters. A big part of the reason why I have pretty much cut ties with them is it just hurt me too much to see them both starting their families but not suffering in the way I did after I had my DC's. My eczema ruined my enjoyment of DD after she was born; I will never know whether I would have had PND anyway or whether it was due to the fact that my eczema was so bad after having her, when for years beforehand I had been free of it and happily enjoying life, enjoying the feeling of 'fitting' in to the world, not looking different, not getting those 'looks' and double takes. Because I have had long periods of time free of eczema I have had the experience that your DS longs for, you described it as simply being 'in the swim'. I have had that but it only makes it all the worse when I have a flare up as I know what life can be like and how good I feel when I am free of it. It just hurts too much when I see my sisters and how they are coping after having their DC's. Of course they struggle with the sleepless nights etc like we all did, but that's all they struggle with. They don't have a huge additional burden like I did and still do and it is this additional burden that impairs my enjoyment of life, every single day, to a greater or lesser degree.
Probably like your DS, when I have a flare up, my behaviour changes, I treat people differently and behave differently because I am so self conscious and I am sure I appear unfriendly and stand offish. But I'm not, I just get very shy and just want to hide away. But when I am eczema free I can really be myself and she, the eczema free me, is the person I want to be all the time, I like her. I don't like myself or my behaviour at least when I have a flare up, I become moody, grumpy, stroppy, angry, but I am angry and grumpy because of the eczema, nothing else.
Perhaps your DS feels the same. He has the real 'him' trapped inside, and he wants to 'be' the real him, but he lacks the confidence to be who he really is because of his discomfort about the way he looks. And in my case i know people react to the me who appears standoffish and I find it hard to make friends. And yet once people do finally get to know me, I can tell they like me and I just wish I could be the real me all the time, but I can't because I always feel a certain level of depression and unhappiness all the while I have eczema. Even DH doesn't really know or understand how I feel, how my eczema makes me feel angry, depressed and grumpy every single day from the minute I get up to the minute I fall asleep. It is never off my mind. Even when I am happy about other good things in my life, the happiness is always dampened a little by knowing I still have eczema, I never feel complete, unadulterated joy or happiness at things I could feel that way about if it were not for the eczema.
Perhaps your DS feels this way too. He cannot change his features drastically or at all and perhaps he constantly carries around with him the sort of feelings I have described, never able to feel truly 100% happy or relaxed because he always has some level of anxiety about the way he looks.
I really like your idea of a Mumsnet campaign am going to think some more about that and how we could pursue it.
I think the Alice Miller books you have ordered are the same, the title of her most famous book The Drama did vary a bit over time, but it's essentially the same in all it's editions. It can take a little while to get into Alice Miller's writing style, but if you persevere I am sure you will find it highly enlightening. Your DH might like to read it too, it probably has a lot of relevance to him given his parents. I have read The Drama over 20 times and each time I find something new in it, it's the only self help book one needs I think.
I just want to say thank you for taking the time to read and respond to my posts. I realise I have been keeping a lot of this stuff inside me for years, I have never felt able, until now, to talk in detail about my eczema and how it makes me feel and how it has affected every single aspect of my life, and it's so nice to finally be able to 'talk' like this in the knowledge that the person 'listening' will understand where I'm coming from. I've been on MN for a number of years now and this is the first time I have talked about all this stuff. More importantly I am 40 and have been carrying this stuff around with me, inside, for around 30 years, to finally be able to let it out is amazing. So thank you.