United Brachial Plexus Network

A lot of the time this is my main dilemma about my injury. Most people never notice that I have an injury at all. (This is including people who know about and deal with brachial plexus injuries on a daily basis.) But I only have about 40% usage and I have periods when I'm in a fair amount of pain. Also, if I use my arm too much, like from lifting things or carrying a plate at a buffet (I hate buffets!) it hurts for the rest of the day usually.

So when people don't know, how do you tell them? I've tried various approaches, the most successful involve a lot of detail and some emotional impact, so I don't end up telling people that I don't have a lot invested in emotionally, but sometimes people need to know, so, what do I say? Any thoughts?
Carrie

I TELL THEM I HAD COMPLICATIONS DURING BIRTH.CAUSING SOME NERVE+MUSCLE DAMAGE.AND ONLY THAT! I AM 32 YEARS OLD I HAVE BEEN USING THAT FOR OVER TWENTY YEARS NOW*LOL* WHAT WE HAVE IS NOT A LAUGHING MATTER HOWEVER.THIS IS THE FIRST TIME I HAVE EVER GIVRN ADVICE, BUT HOPE IT HELPS.

Carrie:

Samuel had it about right. If someone should notice and ask (some notice but don't ask right away) I tell them that I was injured during birth. Usually that's enough but sometimes they are curious about what happened and I'll explain further with details about my injury and that it is still happening. Most people don't know of the brachial plexus let alone Erb's Palsy. The Awareness bracelet that I wear has attracted the most attention lately. It's been a great opportunity to spread awareness. Also, I carry cards in my wallet that explains the injury and I'll give them one.

John P.
66, ROBPI

Carrie,

I agree with what John wrote. If someone asks, I tell them it's a birth injury. If they inquire further, I tell them how it happened. I've known the term Erb's Palsy for nealy 40 years, but I just learned the term brachial plexus a month ago, so I haven't had the chance to use that term with anyone who didn't already know me. Also, I didn't know until a month ago that this is still happening to newborns.

I don't have an awareness bracelet yet. I saw the wallet card on the UBPN web site, but I couldn't print it out. I'll try again soon.

You didn't say how old you are or mention any particular group of people you were concerned about telling. I'm going to go out on a little limb and get personal, here.

When I started dating, I was always up front about my arm. I reasoned that if a guy couldn't handle it that I was handicapped, then I was better off without him. I don't know if my arm actually turned anyone away from me. Some guys never called me again, but no one ever reacted negatively when I told them, so I don't know why they didn't call again.

When I started dating the man I married, for some reason I had a hard time telling him. I somehow knew that he had not noticed it. I was going to have to bring it up myself. I remember that on one date, he took my BPI hand in his, as we were walking from his car to a restaurant, and commented on how small my hands were. Knowing that my BPI hand was smaller than my other hand, I knew that he had given me the opening that I needed in order to tell him.

After I had told him, he said, "Do you know what a prosthesis (sp) is?"

I answered, "Yes."

He said that his father had lost his left hand and part of his left arm due to an accident at work, about 20 years prior. His father wore a prosthesis. Since this didn't bother him, he had no problem with my handicapped arm. I was so relieved. To this day, my husband is the only one I've ever had trouble telling.

As I said, I'm going out on a limb guessing that you are worried about the guys you might want to date. But here it is: If the guy is worth it, your BPI won't matter to him. The kind of person that you are inside will be far more important to him.

Good luck,
Joanie

Oh, this really has more to do with more practical things than dating, for example, I'm in an organization that makes monthly purchases of cases of soda for a fund raiser, and it's the job of one person per month to go buy the soda and get reimbursed later, but how do I carry all that soda inside the building? I guess it boils down to: I need to ask someone for help, and then that goes into the whole broaching the subject topic.

Dating is not so much an issue because I can usually talk with people one on one about the injury, I even have one close friend who likes to Tango and figured out different arm/hand positioning for me to dance with him. Mainly right now it's more of a practical measure and a group concern and I just wondered how others with maybe less visible injuries handled that topic. (I was glad to hear from you, John, specifically, because I remember our injuries looked very similar.)

I'm 24, I've been around and posting on these boards since I was 19, so I forget to introduce myself sometimes when I post. I'm in graduate school in Williamsburg, Virginia, but am from upstate New York.

Thanks,
Carrie

Carrie
As a chronic volunteer I have been in the position for years where I have to explain my arm to people I considered strangers...
I hated to do it but found it was easier to just tell them " I was injured at birth and am not allowed to lift any heavy objects".

Very few people pursued the topic more than my initial statement.
Those who did were truly interested because they never realized I had anything wrong with my arm.
Many of the groups I belong to know that lifting it out for me.
I make that clear right from the start now.
I say I am sorry but I cannot lift heavy objects.
Now that I am older the younger girls do it anyway and I don't have to explain to them... LOL

Joanie I explained it to my husband when we were dating and he looked at me like I had two heads.
He never noticed and thought it was no big deal.
Now I have him working for UBPN at camp etc with me...
Wonder if he thinks its a big deal 40 years later... LOL.
Kath

I to never knew what to say.I could hide it until my right arm was also diagnosed with bp.Going into detail may be hard.I say the samething as everyone who posted.It's a birth injury.You need to tell them you can't pick up soda or you can ask someone in the store to load the cases.I'm sure they will.we are all very stubborn and asking for help is not something that comes easy.I've over done and been in pain rather than ask my family to help me.Ask when you need to and explain your injury.I've also educated people who would never know what bpi is.

Um, perhaps this is a silly question, but I'm forging ahead and asking away:

Should everyone with Erb's avoid lifting heavy or does that only apply to certain degrees of disability?

I'm asking because at 26, I've been pushing, pulling, lifting, carrying and dragging all kinds of loads. Heavy ones, too! And while I know that I'm plenty capable of managing it, am I doing damage in the long run? Even if I don't have pain??

Something tells me the advice will be to talk with my physician, but I have a new healthcare plan and a new doctor. So in the mean time, should I continue living life as I always have or should I be taking extra precautions?!?

Sorry for the odd question here, but I've never paid much attention to my injury and my knowledge is relatively limited. Thanks in advance!

My arm hangs funny so my injury is noticable and I get asked a lot. I have a few different ways of answering:

1. The person is very nice but I'm kind of busy-- I'll tell them I got stuck while I was being born and the doctor twisted my head and injured my nerves.

2. The person is nice and I have some time--I mess with them!!! I'll tell them something about an airplane or getting ran over by a car or something crazy. Their eyes get big and their mouth gapes open! It's hilarious! I tell what really happened after that. It always makes me laugh though....I love to mess with people in general!

3. The person is snotty/mean and they ask-- This doesn't happen often... it fact only once. I was talking to my friend and this group of girls a grade younger than me were talking beside us. One turns around and said (very snotty) "What happened to your arm?" I looked at her glared, then spun around and contiuned talking to my friend leaving her standing there! My friend looked at me funny and I told her I heard the girl, I just chose not to answer. We started laughing then finished talking! I had been SO CLOSE to using my comeback line (you guys can borrow it if ya need it) "What happened to your arm?"--"WHAT HAPPENED TO YOUR FACE?!?!" lol, I wish I would have said it to her.

Well, that's what I do when people ask me!

As far as asking people for help I don't ever need to ask for help when it comes to carring heavy things. I can do that fine. I do need to ask for help when we do weight in the PE room though. I get a friend to hold up the left side of the weight while I do the right. But that was only twice a year last year, now I'm in athletics and all we do is run!

In soccer, my team just knows I can't throw the ball in. It's not really that I can't it's just that it would be an "illegal throw-in" because my arm doesn't go all the way behind my head (but I can't throw it very far anyway =))!

Brittney, 13
LOBPI