United Brachial Plexus Network, Inc.

For me, the short answer to the self esteem question is, "Yes." As far back as I can remember, I knew that I wasn't as able as other people were.

Joanie, 56, LOBPI, Ohio

I know that Erb's has affected my self esteem. Of course being a pretty homely kid didn't help either. To this day , I am uncomfortable in large crowds. I don't dance because I look odd, and I avoid anything that makes the arm noticeable.
I've learned to live with Erb's but it is with me every day. I am always conscious of holding my arm differently and dread having to explain why I can't lift over my head, turn my hand over, type for long periods of time etc.
I don't deal with a lot of noise well, feel that my attention span is affected and have suffered with bouts of depression throughout my life. Other than that, I'm great. I do have a good job as a clinical syatems administrator. I put wellness clinics in businesses, I got good grades in school.
I always felt different and unloved. I felt like their was a shadow around me that let people see that I wasn't perfect. ( I think I got over that one when I turned 40.) I have some good friends. What else. Good days and bad. Life gets better the older I get.It can't be changed. Erbs is just something you learn to deal with every day. You still live a full life, but always in the back of your mind you think--I'd sure love to know what 2 good arms would feel like. Imagine all of the things I could do.......

Pat,
Your story is alot like mine. I am grateful I "hit a wall" in the mid 1990's from a lifetime of stuffing/ignoring my emotional & physical pain. I got help for my depression and I sincerely hope you will consider getting help too. Depression can be another secondary condition of BPI. There is help for this.I found out it is unnecessary to "suffer thru it" now days with a variety of medications that I call "miracle relief".
Hugs, & Camp 2007 or Bust!,
Carolyn J
LOBPI,age 67 & proud of it!

i am

Hi Sarah, I had to laugh as I read your post - I have a noticable difference in the sides of my face... the left side (my bpi is on my left also) has less facial tone, and my left eye is definitely smaller, or at least more squinty (is that a word?) It is really getting more noticeable as I age, I think, or else maybe it is just a good excuse to use instead of accepting the aging! LOL Thanks for sharing, it makes me feel better to know I am not alone.

Shelly

Hi Trinda,

I think the whole self-esteem issue is just like everything else in life - it is diffferent for each person. When I was very young, my parents raised me with the "can-do" attitude, and taught me that people loved me for who I was, not how I was made. For many years, that kept me happy and content.
Unlike many of the other responses I see, I had more difficulty as I grew up. About the time I got to high school, I realized that my parents were very wrong in what they had told me. I could NOT do anything I wanted, and there were so many limits thrown in my face all at once... (I think they call it REALITY...) I lost all balance in my life. I don't think depression covers it - there was that, but there was a rage that grew from it too... hard to describe. I never found a sport or occupation that would work well for me, I do have a severe BPI, but I eventually learned that I could be great at something - being a Mom.

Since then, I have regained a little control again in life. I have overcome most problems that I face, although I think the questions bother me more now than they ever did as a kid. You are taught to expect things from children - but you are also taught that adults will be more understanding, which for me, they have not been. I used to be more outgoing as a teen, but I find as I get older, I get a little tired of explaining, and the pitiful looks start to aggravate me now. I too am in my 30's.

I have met the offensive types, too. I usually try to give them the benefit of the doubt, and pretend like they don't mean to be so rude. When people have taken way to far, though, I am not afraid to unleash a little. I had one lady compare me to a friend, and then that friend to another, and so on... until she had made her last comparison to someone who was completely incapacitated both phyically and mentally. She ended her whole "story" by saying how amazed she was that people "like me" could get by in life without being totally humiliated and ashamed. I just looked her in the eye, smiled, and said "well there are a lot of people who say things like you just did, but you get used to the ignorance and rudeness somehow."

I hope that you have, or can, find your balance too. It is what finally put me at ease with my BPI, and the world around me. Good luck!

Shelly

P.S. sorry this was SO long

I understand about the hand shaking. I am also a right OBPI.Please keep your head up. I don't have many friends, mainly because they do not understand the condition, and know at age forty don't even bother to explain. there are so many things I wish I could do or paticipate in in public, but even at my age I get tired of the stares.

In earlier years, my "difference" never affected me; but now, at age 69, with arthritis and other age-related problems,I feel very self-conscious - especially putting on a coat in public. It is a struggle. At home, I partially button tops, sit down, and put them over my head; but that's hard to do in a restaurant or theater. Any suggestions on how to dress gracefully?

Sounds like you're going to be fine. I was a cheer-leader in high school, after I decided to "come out of my shell." In a small town, everyone knew why I moved like I did, so there was no problem. Keep using your arms. I think that part of the reason I'm having more trouble at age 69 is that I have become less active.

Welcome Mswyn to the Message Board

I hear you loud and clear when it comes to buttons etc.
I use to be able to do it fine one handed but the neuroma on my wrist really bothers my thumb and restricts my "good" hand.
I also have severe osteoarthritis in both hands.
My pinkie and ring finger on my robpi hand are the only two normal looking fingers.

I usually leave my coat open, I also slip my robpi arm in first and take it out last letting my coat just slip off on that side.

I am very lucky I have the same close friends for most of my life so when I could not do my hair they did it before we went out.
My girlfriends would help without being asked.
They fix my collars and scarfs now that my hands are so painful and using one hand is so much work.
This morning my friend told me it was time to remind them once in awhile because they forget my hands are getting so bad.
She told me I made it look so easy and compensated so well that people don't realize how difficult things can be at time.
She thinks I should complain more and ask for help instead of pushing myself... LOL...
I tried to explain that this is easier said then done.
I think I am having a very hard time with the secondary issues and they way they impact my life.
At 66 I still find it hard to ask.
I was raised to do everything for myself and now when I should let go I can't.
I hate what has happened to my hands and the fact that I can't do what I use to.
I was forced to write with my robpi hand and have a good handwriting but now can't sit and write a letter.
I have to type everything.

Kath robpi