Coping with Palsy as a teen

[OreosAndMountainDew]

I'm a sophomore in high school and I'm Feeling exasperated with my palsy! I don't know any teenagers with similar conditions. I feel like such a freak, I'm in pain all the time, my shoulder twitches, I can't do things the same way other people do, and it's hard to explain my condition to other people. How do you deal with the injury (especially the pain) as a teenager?

[karategirl1kyu]

i always make a joke out of it, that way the stigma associated with it is lessened. when i was younger (im 23 now) i would at least try everything that everyone else did, i'd compare myself to others. i knew that i was different, and if anyone said anything i'd just say i have a disability and then lift my arms up. there were times when it felt like someone was burning my shoulder blade with a torch... alternating ice and heat and taking tylenol would help. nowadays my wrist cracks and grinds and my shoulders hurt, and my elbow sometimes gets stuck... most of the time i just ignore it... just learned to over time.

[cnmoffitt413]

I'm almost 20 and I know how you feel. I recommend finding something you are good at, and focus on that. Whether it is art, music, writing, etc, focus on that. Find friends that have the same interests as you! I was a runner in high school because that was the only sport that didn't require full movement of my arm. People would comment all the time about my running form because my right arm (my BPI arm) wouldn't move while I ran. If someone said something to me about it, I'd tell them exactly how it is, and there is nothing that I can do about it. Usually they feel sorry for pointing it out, and will apologize. Tell them exactly how it is for you! I would tell them that I had nerve damage to my right side that has affected my arm, that my muscles can't hold my scapula in place, my shoulder joint has fused with cartilage and scar tissue, I couldn't straighten my arm out, and I can't turn my hand over palm up. Usually when it was another kid, if I used the proper medical terms ( contracture, supinate, range of motion, scapula, etc) they would get really confused and feel even more stupid because I sounded smarter than them.

Even though people would comment about my arm, I had found something I was good at [running], and I wasn't going to let their comments stop me! You do have talents, find them, and embrace them!

As for the pain, find ways to cope with that. Whether its a lot of stretching or taking some tylenol (which usually helped me), do what works for you! I use heating packs a lot, when I'm home and I feel that my arm is sore or hurting, I put a heating pack on it while I'm watching TV or doing homework.

I really believe, from my experience, that as long as you don't make a big deal about your injury, or let it slow you down from being as "normal" as possible, people will not treat you differently! And if kids are making fun of you, be the bigger person.

I know it's hard in school, having an injury that is noticeable and challenges some day to day tasks. Make sure your teachers/school know that you have a disability. If carrying heavy books to and from class or school hurts your arm, speak up! I always had an extra set of my text books at home because my backpack was too heavy with books & binders in it to lug to and from school! I had to really convince the schools that I needed them, but I didn't back down. Be an advocate for yourself, because you know what hurts, you know what is best for you, and it's you that has to adapt to life with a BPI!

Oh, and I found that having a BPI is usually a good topic for papers in high school, and college essays. Every time I had to write a paper on overcoming obstacles, challenges, or something that has impacted my life, I wrote about this!! I even made a teacher cry because of a paper I wrote about dealing with a BPI injury.


Feel free to ask me any questions. I know what you're going through, believe me! I'm here if you need it! Being a teen is rough, and high school doesn't make life much easier, but you will get through it, I promise!

[OreosAndMountainDew]

How do u make people not feel sorry for you? That's the worst. Like when people are like "o my gosh you poor baby!" because for me it's just reality. It's a duchy reality, but I'm so used to it and it makes me kinda angry when people treat me like a little kid with a disability.

[Carolyn J]

"o my gosh you poor baby!"

.
When someone says the above to you I suggest saying "Please don't patronize me, that bothers me and I have many talents and skills in spite of my injuries". Practice it many times out loud when you are alone until it becomes comfortable.

Please come here and vent all you need too, it helps, "oreosandmountaindew"
Carolyn J
LOBPI/72

[jmar]

i had a cousin that was bedridden his entire life from a birth defect. he has been gone for over 20 years now. i remember a man coming to his house one day and making remarks like "you poor thing" "oooohhh he looks so pitiful" "i feel so sorry for him" and on and on. like he was not even there. there was nothing wrong with his mind!! he told the man to get out of his house and get out NOW!!! my aunt and uncle made the man leave. i learned a lot from him. i still miss him a lot. he did not tolerate anyone feeling sorry for him and he did stick up for himself even though he could not get out of his bed. you do not have to tolerate anyone treating you in any way that makes you feel uncomfortable or less than what you are.

[karategirl1kyu]

if you have to, practice saying it in front of a mirror... that way you have an audience... even if it is yourself! it might help! just be yourself and dont worry about what others think of you! im sure you are a great person!!

[Kath]

Never let yourself be defined by your arm. You are a person with an injured arm. You are not an arm with a person attached.

I don't remember anyone feeling sorry for me... I don't want any sympathy even now with secondary injuries.
Don't ever let this injury take your spirit or take over your life. You can and will do anything you put your mind and efforts into. If you give up and hide because you feel bad or sorry for yourself, you will have a tough life.

When I was little and some kids were teasing me... I learned a good life lesson. My Mom told me " you can sit in the corner and cry and you'll cry alone. Or you can stand up and say...I can do anything you can do." Life is not easy when we are young and learning all the compensations, we have to make, to do the ordinary things in life. We can, however, do everything we really want to do but have to work a little harder.

Only you can make you feel bad about yourself. Don't allow anyone to make you feel sorry or bad about yourself.

If someone says "poor thing" you need to give a positive spin on it. Say "Thanks for the sympathy but I can do anything I want to do and just do it a little different." Say it is a very nice sweet positive way. Let them know that you are a strong, creative person.

I have manage to do any of the things I really wanted to do. I have also learned many skills that I probably would not have even tried if I were not OBPI. OBPI tend to look at new things, wondering if we can do it. We never stop to wonder if we want to do them. As a result many of us have learned things just to see if we can... I know I did.

Keep posting and ask questions. You should also read some of the educational materials on the website so that you have answers for nosy people.

[Klioris]

I'm nineteen, I've had Erb's for whole my life tho i think on this forum I was let off with the smallest consequences (i have almost full amplitude about 90%, it's only tough to supports heavy weights up with my right arm, and I'm usually holding my elbow upwards instead of downwards when i'm pulling thing up which are heavier then 3-4 kilos) , and yeah it's tough being different from each other, noticing some people looking weird at you when you do some things differently or the most painful thing for me - when they ask questions like "Have you hurt your arm?", "Is there something wrond with your right arm?". I'm never hiding that I have Erb's because that's what I am and in return I have received many other great talents, but none the less I wish I could have just hurt it and it would be ok in couple of days , maybe a week. Instead I have 19 years of hard work and I still have long way to go.

I don't really know about pain tho cuz I never had any pain in my muscles, only lately cuz I started to outgrow it little by little and now practicing new movements involves alot of pain in atrofied muscles, but the most tough is probably people misunderstanding of what is actually wrong with me, because sometimes when I say I'm partially paralised they start to treat me differently and some people even spread rumors that I almost can't move it at all, and pity and sideway looks is probably the last thing I need in my life. But there are other cases when people don't actually believe me and think I'm making a joke or making things up for the sake of slacking off (since I'm good enough for people to actually not even notice that I have Erb's), but on contrary that makes my life difficult too cuz sometimes when i say "sorry i can't do this and this because of that and that" and people just kinda laugh it off it's painfull, because you know that something that sounds for them like a goddamn joke is actually years of pain sweat and tears spent in various hospitals and rehabs.

But all of the above authors are right, find something your good at enough for people to actually envy you and distract yourself with it (for me it's dancing and photography) and never let it (illness) get to you, because i know what are hours of crying like and I know that they give you alot less then the hard workout of the damaged arm.

[Jennifer P]

What has helped me was finding something that I could do that my arm was also good at.

I struggled so much when I was in high school and college because I felt I couldn't do the things I wanted to. I tried SO many things—ballet, scuba diving, sky diving, color guard, swimming, gardening, belly dancing, yoga, hiking, drawing/painting, even chores count—I hate doing dishes by hand because it hurts, alternatively I really like doing laundry...

Anyway, some of the things I enjoyed in my head I hated doing physically, so I ended up moving on to find new things. While I was sad to stop some of them, I also realized there are other things out there that are much more enjoyable.

Keep searching, you will find something that makes you truly enjoy everything about yourself. It might be quick or it may take some time—for me it took 26 years.