United Brachial Plexus Network, Inc.

Hi, I am engaged to a man who has BPI, we've posted on the board before but it was for surgery information. I'm now posting for myself. My fiance is very self concious about his arm, in all our photos he hides it behind someone, constantly wears hoodies and jackets to put it in, keeps his arms crossed all the time. I love him and everyone else loves him and does not think of him any different. How do I help him deal with his problem? We've talked about it and he plays the silent game, he wants to ignore his arm, tries to pretend its not there and that it doesn't bother him. What should I do? He will not take off his shirt unless he is in bed, he won't were a shirt without an undershirt b/c he has keloids and has a huge scar on his neck. He recently has let me start holding his hurt hand but not if it is in a large crowd. I mean it is not that noticable, he makes it more noticable by trying to go out of his way to hid it. If there is anything I can say or do, please let me know. He is a wonderful person and drop dead goreous (to me ) how can I make him confident in himself? Surgery is not an option b/c he is to worried about wearing a cast and people asking him what for. His arm is problem the worst case of BPI, I've ever seen, it's horrible. His parents have always made his arm a big deal (it gives them attention) could this be the reason he is so worried about it? More than 10 times in the 4 years I've known him his parents have said he come here show so and so your arm. Or pulled out HUGE baby photos of him cut up after he was born. Is this normal? Is it just him or could this probably be a cause to his actions. Please let me know, I don't understand where he is coming from, and I want to so I can help him....maybe let him get a tan with farmer lines on his neck and arms

Jessie,
I am sorry to hear that your man has some self confidence issues with his arm. But it is great that you are going to get married! Congrats.

His parents showing so much attention to his arm could be part of the problem, but I know that I am still a little nervous around someone that I like. It takes a lot to get used to this injury. It takes even more to accept it, which is what your man needs to do. This past summer I got into occupational therapy and had some braces made so I can use my hand better, and I was so worried about what every one was going to think I dont think that I wore one of my braces for the first week and a half of school. I have known all the kids at school for a very long time but it still bothered me. Now though I am used to my braces and comfortable with them so it does not bother me to wear them and I wear them every where. I have a lot of scars from surgeries and they are not my favorite but they no longer bother me. I he is worried about a cast tell any one that asks the truth and educate them or if thats what bothers him, say he fell and broke his arm, or something more macho like a football injury... Maybe if he just talks to some one like another person that has the same injury (like me or any one else from this board) he can become more confident with him self. Hope some of this helps,
Amy
18, ROBPI from MN
hope16_05@hotmail.com feel free to email any time

Jessie:
I've been thinking about your post for a few days now trying to figure out the best way to respond. Here are a few thoughts from someone who has lived with this injury for some time.

First of all, I think that it is great that he has someone who loves him and is concerned about his future. You are a source of support that hopefully he recognizes and appreciates.

Secondly, I think it is sad that your fiance's parents call attention to his injury as you describe. I think it is disrespectful. I'd recommend to him that he sit down with his parents and have a quiet, frank talk about his injury and how he needs their help to deal with it. Bringing his injury to the attention of their friends is not what he needs.

Third, he needs to understand that surgery, if he should decide to go ahead, is something that he should do for himself. He should not do it for you, for his parents, for his friends/co-workers, but only for himself. He should go into the surgery considering the costs (not only $) and the benefits. One cost is that his co-workers will know that he has had a surgery (I'd have to ask "so what"?). Another is that he'll likely be faced with weeks of post-op therapies (don't know what specifically – it's been years since I had mine). I'm not a physician so I can't say what specific benefits of a surgery would be but let's say for argument sake, that he would be able to use his arm better, perform his job easier, and he'd be able to carry on a more productive life into the future. Basically, he should ask himself if he is satisfied with what he has now and if not, whether surgey holds promise for the improved function that he desires. I'm sure that he understands that his is a life long injury. What he can do at a young age to achieve the maximum possible recovery, something that would have a positive influence in his future years, should be given very serious consideration.

Fourth, I wouldn't be too concerned about him hiding his arm, especially for photographs. We all do it, some more than others. It's just one of the tricks we use to avoid calling attention to our injury. It's not a big deal. Hopefully, over time he'll realize that most people aren't looking or even care. However, removing your shirt at the beach can take some getting used to. I don't have a problem anymore, but I remember as a teenager, wondering if anyone would comment about my scars. My friends rarely did and they were the most important persons I was concerned about.

Finally, if he's interested in meeting others like himself, then he should consider coming to Camp next September (you should come with him). I met another with my injury for the first time at the last camp. It was a great experience for me. Sessions are planned where adults can meet and compare life experiences.

This is kind of a rambling response. I get a little philosophical sometimes. I sincerely wish you and your fiancé well.

John P. (65, ROBPI)

I have to say that I think we all dealt with these same kind of issues when we were younger. But, for me, my 30's (especially late 30's) has been pretty liberating. It was like a light switch went on. Who really cares what other people think?

When I had my surgery last year I took the attenion caused by my spint and used it to create awareness. When someone asked "What did you do to yourself?" they got the whole story and exactly what Erbs is, and how often it still happens and how completely preventable OBPI is. I figured with so many out there who don't even know what they have is called, they might overhear something and get some help or maybe someone who knows someone.

I think so gentle understanding on your part and some time will work miricles for him.

I think it is wonderful that he has your support Jessie. My husband did not notice my arm and I had to keep trying to explain it. On our wedding day I only wanted him to promise to hold my elbow down and told the photographer the same thing... how dumb that was my big concern in my twenties. We have all faced the same issues. I never realized how much I longed to met others like me. I realize now I searched ever crowd to see if there were any others with my injury.

When I finally found ubpn and educated myself on this injury I was amazed at how similar our experience were regardless of age. I love having bpi friends I can share with now and most of all I love having the answers to spread Awareness and prevention when people ask questions.

I am so glad John answered. He has given you the best advice. There are many options open to him now that were not available in the past.

I know it may be difficult but I agree with John he should have a good, honest and open talk with his parents. The may not realize that he is unhappy with their conversation about his arm. I spoke with my mother often about my arm and how it happened. Never did we have a conversation even infront of my siblings. My arm was never the focus of my life or a topic of conversation until now.
We all compensate and even hide to prevent our arms from being the topic of conversation just like people use make-up to cover freckles it is normal... well at least I think it is.

Kath