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I’m sorry this is long – but PLEASE BEAR WITH ME and give me your opinions for the sake of my son, who has a chronic, non-contagious, most times extremely painful, unsightly and EMBARRASSING skin condition for which there is no cure, either in conventional or alternative medicine (I won’t go into detail here but believe me we’ve tried everything). Despite all, he tries to remain relatively positive and I am proud of the way he has handled a condition that has robbed him of so many of the opportunities the rest of us take for granted e.g. restrictions on social life, education and job prospects, choice of clothing, what he can eat and more. Over the years he has become totally isolated with no friends/never had a girlfriend. Not much of a life for a young man in his twenties.
Previously this skin condition (which I am intentionally not naming in the interests of remaining anonymous) has been restricted to areas of the body which can be covered with clothing but a couple of weeks ago it spread to an area of his face - for all to plainly see. Currently it manifests as a raised area with multiple openings which scab over but never heal.
Apart from myself, my husband and one other relative, no one in the extended family knows about the condition. Due to its embarrassing nature, at age 12 my son stated categorically that he did not want me to talk about it to anybody and so when he has difficulty in walking etc due to pain/active wounds we have passed off his illness as something else, as no one could actually see it.
However, I now feel it’s time for him to “come out” so to speak with the extended family. At the next family gathering anyone who sees him is bound to notice his face. (covering it with a plaster/bandage etc is not readily do-able, and in any case would only be postponing the issue till next time). I am guessing my son will not want to go to the next family event as in general he is becoming more and more reclusive (he has recently declined to visit relatives/sometimes makes himself scarce when we have visitors). Some members of the extended family are generally quite tactless and I can think of one or two who would look disgusted and blurt out “OMG what’s that on your face” or worse. I can’t blame them for being ignorant (indeed some doctors have all but come out with the same sort of thing, and in their ignorance have dismissed the condition as a hygiene problem, which it isn’t – getting a diagnosis took forever). I don’t want my son to be on the receiving end of such comments, or have family members whispering/staring, but on the other hand I don’t want to have him isolate himself from the family for evermore. So, what to do...
I am wondering if it’s worth my suggesting to him that he write a letter to the family collectively, explaining as much as he feels comfortable with about his condition, in the hope that they won’t be too openly shocked when they see him and will be mindful to be tactful. I’m not saying that they are not to mention anything at all about it, but just to be sensitive – I think he’s entitled to that. My heart breaks for him (I’m tearing up!) – he never complains about the cards life has dealt him and just gets on with things the best he can. He SO deserves to have happiness.
How would YOU react if you got such a letter from a nephew, niece, cousin etc. What do you think the outcome would be or is there another way forward? Thanks for reading this – please do post.
I would hope a letter would make the extended family be sensitive to this issue and to be mindful of his feelings. If I received a letter like that, I would most likely call you and ask any questions that may not have been answered in the letter, such as does he prefer I do not mention it at all or is it okay to let him know I got the letter, etc. I think most people just want to handle sensitive situations in the best way possible.
I think a letter is a great idea. I am truly sorry for you.
All I can say is that medical technology moves fast and I pray that some clever researcher comes up with a solution to this problem at some time in your child's life.
Quote:
Originally Posted by Carnation
I’m sorry this is long – but PLEASE BEAR WITH ME and give me your opinions for the sake of my son, who has a chronic, non-contagious, most times extremely painful, unsightly and EMBARRASSING skin condition for which there is no cure, either in conventional or alternative medicine (I won’t go into detail here but believe me we’ve tried everything). Despite all, he tries to remain relatively positive and I am proud of the way he has handled a condition that has robbed him of so many of the opportunities the rest of us take for granted e.g. restrictions on social life, education and job prospects, choice of clothing, what he can eat and more. Over the years he has become totally isolated with no friends/never had a girlfriend. Not much of a life for a young man in his twenties.
Previously this skin condition (which I am intentionally not naming in the interests of remaining anonymous) has been restricted to areas of the body which can be covered with clothing but a couple of weeks ago it spread to an area of his face - for all to plainly see. Currently it manifests as a raised area with multiple openings which scab over but never heal.
Apart from myself, my husband and one other relative, no one in the extended family knows about the condition. Due to its embarrassing nature, at age 12 my son stated categorically that he did not want me to talk about it to anybody and so when he has difficulty in walking etc due to pain/active wounds we have passed off his illness as something else, as no one could actually see it.
However, I now feel it’s time for him to “come out” so to speak with the extended family. At the next family gathering anyone who sees him is bound to notice his face. (covering it with a plaster/bandage etc is not readily do-able, and in any case would only be postponing the issue till next time). I am guessing my son will not want to go to the next family event as in general he is becoming more and more reclusive (he has recently declined to visit relatives/sometimes makes himself scarce when we have visitors). Some members of the extended family are generally quite tactless and I can think of one or two who would look disgusted and blurt out “OMG what’s that on your face” or worse. I can’t blame them for being ignorant (indeed some doctors have all but come out with the same sort of thing, and in their ignorance have dismissed the condition as a hygiene problem, which it isn’t – getting a diagnosis took forever). I don’t want my son to be on the receiving end of such comments, or have family members whispering/staring, but on the other hand I don’t want to have him isolate himself from the family for evermore. So, what to do...
I am wondering if it’s worth my suggesting to him that he write a letter to the family collectively, explaining as much as he feels comfortable with about his condition, in the hope that they won’t be too openly shocked when they see him and will be mindful to be tactful. I’m not saying that they are not to mention anything at all about it, but just to be sensitive – I think he’s entitled to that. My heart breaks for him (I’m tearing up!) – he never complains about the cards life has dealt him and just gets on with things the best he can. He SO deserves to have happiness.
How would YOU react if you got such a letter from a nephew, niece, cousin etc. What do you think the outcome would be or is there another way forward? Thanks for reading this – please do post.
I love my nephews, cousins, and other extended family members and I do not love them due to their looks. If they had a condition of any kind, my concern would be for their health and continued happy life, and I wouldn't give a hoot about any way it may look weird or even deform the person I love. See, a person is more than just the outer shell, and the fact is, our outer shell can be broken, harmed, deformed, or weird in all kinds of ways. The person I love is the mind inside the shell and the personality that laughs and cries and loves. I have known family members who lost limbs, had diseases, and just got older and lost their "looks" but that had little or nothing do with who they are as a person or why I love them.
Soooo...please tell your son that family loves him because of who he IS now how he looks. If he is scabbed, oozing and bumpy he would still be the wonderful (but quiet) person he is inside and that is who is loved...HIM. Whether its now or when he gets older, the shell will wear out and start to get ugly--this is a fact. So nope, it's his HEART and HIM that's loved. Now if no one knows and he suddenly walks in with a third arm...people are just bound to wonder. I say just answer honestly and clinically so people can learn that it's NOT an "embarrassing" disease just an illness like any other.
I would be infinitely touched by the courage of such a letter. And i think i might get on the phone to one or two savvy members of the family to work out how best to shut up the less tactful ones before they say something daft rather than after it's said.
As for your son's isolation...there must be ways to open up his world a little. Home-based telephone work, internet groups, face-to-face meets with fellow sufferers? If he's not communicating with anyone other than you perhaps strategies like these might be useful first steps?
I think a letter would be a great idea. Actually, the family may surprise you and be a wonderful source of support.
As a mother with a child that was born with a rare condition too, I know ALL too well the how tactless and downright rude people can be! BUT our family and friends are the most supportive people in the world.
Steve21 – My son is not at all the type to open up but my understanding is that he is in contact with others who share the same condition on internet support groups. However, I don’t know if he has considered actually meeting up with anyone face to face and so will suggest this. Also like your idea to get the “savvy members of the family to work out how best to shut up the less tactful ones before they say something daft rather than after it's said”.
Mommy2 – your positive experiences about support from your family and friends is encouraging – thanks for sharing. Admittedly, we are not the closest of families but hopefully things could work out.
Affaircare – you are exactly right that it is the person inside that counts and he is still the same person as he ever was.
Many thanks to ALL of you for your input which I really appreciate as I never really get to speak about all this. I feel much more confident now that a letter is the right way forward so will definitely be suggesting it to my son. To get him started I plan to draft something for him to edit as he thinks fit.
I think the letter is a great idea. If anyone is unsupportive and nasty afterwards, then really, you don't need to waste anymore time on them. Hopefully your son feels the same way.
My daughter was born with a facial deformity, which has since been made better with multiple surgeries. When she was born, the nurses kept her from me, and people advised not taking any photos AT ALL, so there would be no record of it ever having happened. They recommended covering her face with bandages when we went out, or not going out in public full stop.
Well, I of course did take photos, and refused to cover her up. Yes, people were curious about her, which sometimes came out sounding rude ("OMG, what is wrong with that baby's face?"). I simply explained in a matter-of-fact and informative way. The more I did it, the easier it became. Once they saw that I was not bothered, they weren't. They took their cues on how to act from MY behavior.
Your son will need to have the same attitude. One of "Hey, it is what it is. Some people have other afflictions, I have this." Sure, there will be negative reactions, but it sounds like you have done a fine job of raising him and I have confidence he will find the inner stregnth he needs at this point in his life.
Quoted from Q-bert "I simply explained in a matter-of-fact and informative way. The more I did it, the easier it became. Once they saw that I was not bothered, they weren't. They took their cues on how to act from MY behavior."
Since my last post, I have been reading up on coping with this sort of issue and what you have said, Q-bert, about people taking their cue from you, matches with the advice given. They advocate briefly explaining, re-assuring and then moving on. I so appreciate hearing of your positive experiences with this and am realising that it's important that I myself do not get rattled or angry if people do make inappropriate or rude comments.
I don't know how I'd react if I got such a letter. I'd feel badly for your son, I do know that. I know that if I saw a relative or friend with a deformity I wouldn't SAY anything at all to him. It's called being polite and sensitive. I couldn't imagine saying anything to him directly at all other than "Hi, how is school going?" and the usual chit chat. If there are people in your family would say something like "OMIGOSH WHAT's ON YOUR FACE?" I wouldn't want to be around them and I certainly wouldn't want my child to be. It's the main reason I don't have anything to do with my family, because they are awful, tactless, insensitive people and I don't want my kids being exposed to the same crap I did while growing up.
But I know what I'd do if I were you...I guess I'm in the minority but I would NOT have your son write a letter explaining his condition to anyone. You are his parent and you need to sit down with YOUR family and speak to them or you write a letter about this and if they can't accept him and act sympathetically and tactfully then have a nice family dinner at home with him.
I wouldn't put your son through any more. He has enough to deal with at school and with his peers. This is YOUR family and you need to advocate for him.
I should reiterate that my son is in his twenties but when he was 12 or so he asked that we not tell anyone the nature of his condition and out of respect for his privacy (and because he said he wouldn't tell us next time he was sick if we went ahead and talked about it with all and sundry) we've kept it confidential.
If a letter goes out I still don't think he'll want to supply everyone with the name of the condition and all the finer details; just basically saying that he has a skin condition which is not catching. With the letter coming from HIM, I was thinking along the lines of him taking ownership/control with communicating about his own health. Having said that, I am happy to talk about it with family members myself but I just feel I should seek his permission first, especially as he's an adult now.
However the fact is if he doesn't give me his permission to do some explaining or me/him write a letter, it will all become a BIGGER deal and at the very least be whispered about in aghast tones because anyone who gets up close is bound to notice this unsightly area on his face and wonder.
Ah! I wasn't aware of his age. For some reason I thought he was younger, around 12. So this has gone on awhile.
What I would do is discuss with what he'd like to do and what he's comfortable with. If he feels comfortable taking matters into his own hands and writing a letter then that's how you should go. If he wants you to handle it, then that's good too. I'd let him make the call either way. I agree that you want to be proactive and do something so as not leave him at the mercy of tactless relatives. Sometimes people just don't realize what they are saying or doing. He shouldn't be subjected to that.
I wish you both the best of luck. Life is hard enough without having to deal with situations like this. He's lucky to have a supportive, caring mother like yourself.
I should reiterate that my son is in his twenties but when he was 12 or so he asked that we not tell anyone the nature of his condition and out of respect for his privacy (and because he said he wouldn't tell us next time he was sick if we went ahead and talked about it with all and sundry) we've kept it confidential.
Honestly, and no offense, I'm really not trying to blame anyone or cause you any more pain, but I think that letting him hide it only intensified his isolation. It solidified in his mind (of a child) that you agreed that it should be hidden. If you had taken the lead and said, 'you have nothing to be ashamed of and I won't let you hide from who you are' he may have learned that he CAN accept it and himself. I see that all the time in stories of people who are different, when the parents boldly refuse to let the world tag their child, and steadfastly refuse to let the child give up on what everyone else can achieve.
By now, I think his actions prove out that he has convinced himself that he is flawed and unloveable. I guess I would take two steps:
(1) Sign him up for some really good counseling with a qualified psychologist, so he can learn to come to grips with his lot in life, and become proud of himself
and
(2) Tell him that you feel he has no reason to hide himself from the world, and you are going to do whatever it takes to show him that. Do some research into people who have severe dysformities yet DO go out and live a full life, and show it to him. Show him all the people in the world who take that first brave step out into the world and - lo and behold - are accepted, even loved!
I think he desperately needs to hear that from you, and see you lead in example.
I am not offended Turnera as I see it as a constructive observation on your part so thank you for posting. However, having said that, my first, perhaps defensive, response is to say that he was frequently too ill (physically that is) to attend college etc, even dosed up with painkillers, and thus drifted apart from his friends and acquaintances (his face was not affected until recently). I know I am right in saying that the majority of people with this condition do not disclose it but what you have said about the effect of my condoning is thought provoking. Still, rightly or wrongly I didn't feel I had much choice.
I think counselling is a great idea. Although I have tried hard to encourage him to be more proactive in various areas in the past, it can often be the case that people won’t take telling from someone close to them, whereas if an outsider or professional says something similar they take note. I do agree he needs to know he is much loved and valued and have indeed made this know to him over the years and must continue to do so.
Embarrasing painful complaint and isolation 
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Ah! I wasn't aware of his age. For some reason I thought he was younger, around 12. So this has gone on awhile. 
