United Brachial Plexus Network, Inc.

I've been googling "Erb's Palsy" since 2004 when I first learned that what I had actually had a name. I'm so excited that I've come across this network with people of different ages! Like many others, I'm relieved to find that I'm not the only one that feels this way. I moved a lot while growing up and never realized I was different until I moved to the bay area in the sixth grade. My parents never spoke to me about it, so when I realized something was wrong I was more embarassed than ever. I remember going to a routine doctor's appointment with my mom when we first moved and this new doctor was confused as to why I couldn't lift my arm or extend my elbow. I tried to hold in my tears but it didn't work, and when we left the office, my mother pretended nothing had even happened. From then on, it's been nothing but a daily struggle but luckily I occupy myself with enough things to keep my mind off my BPI, pretending it doesn't exist. But then it's days like these that really get me thinking. Next month I'll be turning 22 and I have some really great friends that want to plan a trip to Las Vegas. How can I tell them I don't want to go? They've never really asked about my BPI, but I ended up explaining it to them the winter of 2005 when I had a latissimus dorsi transfer. I pretend it doesn't bother me, so they accept me the way I am. I actually went to Las Vegas this past June with the same group of girls and I had a miserable time. I don't think they realized how horrible I was feeling, and instead of coming back home exhausted from my "Vegas" trip, I came home more depressed than ever. We did all the things I hate, dancing, walking in heels, and celebrating the freedom of youth. I felt like a prisoner in my own body and hated walking without having pockets to rest my hands in! All the girls had a wonderful time and couldn't wait to go back, while I couldn't wait to go home to my room. I don't understand why my friends insist on taking me to Vegas. They don't understand that I can't put myself in awkward situations, and no matter how many times I've told them I hate dancing...it doesn't work. I guess this is a bit of a strange situation and I can't understand if it's me or the people around me. I feel as though people, including the members of my family can tell that there's something different about me, but don't want to accept it or ignore it. Whenever I tell them that the reason behind some of my decisions are because of BPI they get uncomortable and change subjects. I've been pretending nothing's wrong for too long, and I'm ready to accept the fact that I have Erb's Palsy. The older I'm getting, the easier it is to deal with life, and I hope that through hearing other people's stories and connecting with people that are going through the same struggle I am, will help me out tons.
Josie

Josie
Welcome to the Message Boards. It's hard for others to understand our restrictions. They think we don't want to do things and just don't understand that there are some things we just can't do.
I think your friends see you as perfect and really don't think that there is anything wrong with you. I know my friends saw me that way all our lives and when I found UBPN they were amazed when I began to really share things about my arm and some of the things I can't do.
We have been friends since we were 19 and now we are all 68 and that's a lot of years of friendship. They just really saw the things I could do and do well... they never realized how many things I could not do because I never spoke about it. Yet they knew I had limitations and would help without being asked if things were heavy or even help me to put my hair up... I think they mean well and just see you for who you are and not what is wrong with you...

Feel free to ask and questions or just vent if your in the mood. We are all here to help and we have been in the same place you are in now.

Kath robpi/adult

I grew up not having any clue why my "crippled arm" - as I thought of it - was the way it was. My mom told me it was Erb's palsey and they'd done surgery when I was two but that was about it. I don't think she understood it completely, so I never did. It wasn't until last year - at 39 - that I started researching Erb's and began to understand what happened and what it meant in my life. I suggest you do the same. You will be amazed at how much easier it makes explaining your abilities & limitations.

As far as your friends - if you've always blown off how serious the condition is, they may not understand what it causes you. You need to explain that to them in more detail. You may need to emphasize to them that it isn't you being a stick in the mud; it's because things cause you REAL pain. I doubt your friends want you to hurt just so they can do what they want. If they do then they ain't people you want to hang out with.

Chances are they like and accept you for who you are. Period. It has nothing to do with your BPI. Chances are they never even think of it. I always felt it was this huge thing everyone just HAD to notice, but I've found I'm wrong. Most people aren't observant enough to even notice! My best friend of 25 years still forgets that I have to do things differently. That's because as my friend, she sees ME and not my arm.

That said, acknowledging your injury and not letting it make you feel trapped in your own body is a wonderful step! It is part of who you are and the earlier you understand how it can effect your life the less effect there will be. You may try counciling to help you with this. Counciling will also help you to accept and deal with how your family reacts. YOU HAVE NOTHING TO BE ASHAMED OF. Your mother may feel guilty or like it was something she could have prevented. But that is HER issue; don't let it become your's! The same goes for other people's view of your being "different."

There are some things you can learn to do differently to help compensate. Ways of donig things to ease the stress on your arm that cause pain. Try a chiropractor and a good massage therapist. They have done wonders for me in eliminating the muscle stresses and pain associated with my OPBI.

If you want to go to Vegas with your friends, then go. If you don't want to go, don't. But don't let it be because of your arm. Explain to them, as a group, that while you enjoy very much being with them, but there are some things that cause you physical pain because of your condition and you have to avoid those things. There is nothing you can do to change it and they have to accept that. I understand avoiding awkward situations too - like dancing. For me it was always being afraid of them. Facing them head on and getting through them taught me that I can do the same again.

Finally, try getting your friends to meet you in the middle as far as what you do in Vegas. Tell them you'll go dancing one or two nights - awkward as it may feel - if they don't push you to wear heels or bug you to get up and dance instead of sipping a drink and people watching. And there are sooooo many things to do in Vegas other than party! Try getting them to do more things that will allow for wearing jeans or casual pants with pockets. Maybe go to a show or window shopping or take a short hike at Red Rock or in the Valley of Fire. Also, have you tried talking them into a spa day? I can't imagine any woman would say no to that!

If not resting your hand in a pocket makes your arm hurt that badly and you want to get dressed up then buy a sling. You can dress it up with some bling! Then, you have an accessory and it anyone asks what happened, just say "oh my shoulder's hurt" and move on in the conversation. (Or be funny and say "I pulked a muscle when I had coldcocked a guy that grabbed my butt last night.") Plus, think of all the guys that will open doors for you. Your friends may end up wishing that had all of that attention!:)

I don't want to lecture you, but your attitude about your injury is the most important thing. My additude - formed mostly by my mother's overprotectiveness - kept me from trying so many things that I regreted later not trying. I was afraid of everything, especially looking silly. I've finally decided that doing it and looking silly is better than never trying something new! It would be a shame if you shut yourself away from things and used your arm as an excuse not to try things that you're afraid will make you look silly.

Hope you go to Vegas and have a great time!

Hi Josie,

Im 22 so know the whole thing about being young and tryin to do young things and feeling like your arms going to fall out of the shoulder! its horrible! but can also be manageable!

I knew about my Erbs from a really young age and although my parents didnt talk about it overly much they would still address it if it needed addressed. However, it took me AGES!!! to be able to explain to people what was wrong with my arm and how it affects my daily life but believe me once you have your wee "script" ready you'l find it so much easier. By script i mean your way of telling people that doesnt make you feel uncomfortable, that doesn't make you stutter your way thru some medically complicated crap! For me its as simple as, i was stuck when i was being born and its left me with limited movement in my arm and it gets sore sometimes, particularly when im walking around alot or when its really cold.

As for telling friends, that can b quite weird especially when theyv known u forever and u dnt tell them whats up for ages. but its nice just to drop things in a bit at a time as issues arise. Like as for going out dancing, i personally love it my erb arm gets thrown about the place in a dancing motion and i can actually imagine how ridiculous i look but i cudnt care cos i have fun. but i need so sit down quite often, stretch out which looks ridiculous in a nightclub. but when i started goin out wiht friends id say ach this makes my arm pretty sore and have a wee laff about me going to do my stretches now. and now every1 is totally ok with it and don't really notice it.

And as for acting as if you

sorry pressed the return button too early!!

...So

As for acting as if your ok with your arm to make ur friends accept it...yes thats a good coping strategy but its certainly short-term. Your friends will accept you no matter how YOU feel about your arm. They already accept you so I wouldnt keep in about how u feel cos your only torturing yourself love! Your friends may not no the extent to which it effects you emotionally and physically. I mean ALL your friends dnt need to know how u really feel about your arm but telling just one of them may just let off a little steam and help you build your confidence surrounding your arm. Friends find it so interesting ... your one of a kind, unique and very special so you should just be YOU and those who really matter will stay around and join you on your journey of ups and downs!

I hope iv not babbled too much and some of this is useful for you!

Take Care

Michelle
ROBPI (Scotland)