Telling classmated about your AVM

To all the teenagers or parents of teenagers suffering from an AVM:

Do all your classmates at school know of your medical condition? My daughter will be a freshman in high school this year. She has tried to keep her medical condition hidden from her classmates. She is worried about how everyone would percieve her. Being a teenager and all, I just wanted you to share your experiences regarding disclosing your medical condition to your friends and classmates and whether they treated you differently or not after knowing about your condition. I have told my daughter that it would be better if people at her school knew of her condition just in case something happened, they can get immediate medical attention for her. She still doesn't want any of her friends or classmates finding out. Any suggestions?

At the very least, you should let the school nurse, teachers, and administration know. They need to know how to respond if something bad were to happen. If not, she may not get the prompt emergency attention she would need, if she should need it. My daughter is 10, and we met with the whole team of specialists prior to her starting school last August. The nurse had a note with the clinic volunteers, that they were to call her and me, if my daughter ever came into the clinic for anything. The staff can’t give out that information to other students, so she will still have her privacy. However, I would think it would be helpful for at least her closest friends to know too. They could be the first ones to notice if something wasn’t right. We found that everyone that knew of my daughter’s condition were very compassionate and caring. I know that high school is a different world than Elementary school, so I’m sure you will make the right decision for your daughter.

I feel better when more people know…there are so many ways for an emergency to happen, and the nurse might not be involved/available.

One thing you might want to talk about with your daughter is how she would explain her AVM to her friends…she might be afraid of saying she has a “brain condition,” when really it might be enough to say that it’s a problem with the way the blood vessels grew. (I’ve heard that some people say it’s like a brain tumor, which is very misleading!)

I can’t speak from a parents point of view, but from someone who had an obvious medical condition (facial AVM’s are hard to hide!) all through my childhood and high school, I would advise your daughter to share her condition and use it as a way to build her confidence and to educate others on compassion, understanding, and how “normal” a kid can be who has a medical condition or disability. This is hers to own. So tell her to own it. She can’t come to terms with what reality has given her if she hides it.
And honestly, kids are pretty understanding. As long as she seems strong, confident, and knowledgeable about it I believe that most kids will be fine with knowing and may even look up to her a bit. Perception is all about presentation.
Even with a very visible reminder of my “condition” I was a popular kid, a cheerleader, an honor student, and had all of those typical high school experiences. And my friends looked out for me. They knew that what I had was potentially dangerous. They knew what needed to happen if I had a bleed. They also knew that despite all of the confidence I had, that a comment from a random stranger or weird looks could sometimes shake my confidence and could even reduce me to tears. And they were not only my best protectors, best advocates, best supporters, and best “do you want me to yell at them?” friends…they were totally understanding and supportive. How lucky was I to find that so early? How very awesome that I gave my friends the opportunity to learn that level of compassion. I think we are ALL better people as adults because of what I allowed them to be part of during my journey as a child and teen.
So in short, tell her to own it, be proud of herself for being a fighter, and don’t be afraid to be who she is, allow people to know her and be given the opportunity to support her. Those are my two cents! :slight_smile:
Good luck!
Shalon

Thank you all for your advice and words of wisdom! Hopefully my daughter will build up some self confidence and be able to deal w/ others knowing about her condition.

Iana, This may help, or not! I was a teenager when I had my avm and operation. I can remember having to disappear for apointments and my friends not knowing what was going on as i kept on ‘going to the dentists.’ I then told a few solid friends but, teenagers being teenagers, those who didn’t know began to imagine all sorts of things when I was absent from college which got a bit tiresome.

It is probably better for your daughter to tell people at school though that’s a decision only she can make.

All the best
flower

I love what you wrote Shalon…it helped me and I will share forward the advice. Take care :slight_smile:

Shalon said:

I can’t speak from a parents point of view, but from someone who had an obvious medical condition (facial AVM’s are hard to hide!) all through my childhood and high school, I would advise your daughter to share her condition and use it as a way to build her confidence and to educate others on compassion, understanding, and how “normal” a kid can be who has a medical condition or disability. This is hers to own. So tell her to own it. She can’t come to terms with what reality has given her if she hides it.
And honestly, kids are pretty understanding. As long as she seems strong, confident, and knowledgeable about it I believe that most kids will be fine with knowing and may even look up to her a bit. Perception is all about presentation.
Even with a very visible reminder of my “condition” I was a popular kid, a cheerleader, an honor student, and had all of those typical high school experiences. And my friends looked out for me. They knew that what I had was potentially dangerous. They knew what needed to happen if I had a bleed. They also knew that despite all of the confidence I had, that a comment from a random stranger or weird looks could sometimes shake my confidence and could even reduce me to tears. And they were not only my best protectors, best advocates, best supporters, and best “do you want me to yell at them?” friends…they were totally understanding and supportive. How lucky was I to find that so early? How very awesome that I gave my friends the opportunity to learn that level of compassion. I think we are ALL better people as adults because of what I allowed them to be part of during my journey as a child and teen.
So in short, tell her to own it, be proud of herself for being a fighter, and don’t be afraid to be who she is, allow people to know her and be given the opportunity to support her. Those are my two cents! :slight_smile:
Good luck!
Shalon

I am not a teenager and never had to deal with telling friends etc., but I am a teacher, and kids surprise you many times being more compassionate/understanding than we give them credit for. I have had sick kids in my class (sickle cell anemia/leukemia/severe asthma) and other kids are very understanding and protective. i do agree that she probably shouldnt just say there’s something wrong with her brain…that could open her up for teasing. But if she explained that her blood vessels were not right and may cause a bleed I think other kids would be understanding of it. Good Luck to her! High school is hard enough without any other complicating factors.

Yes it’s hard I think I will tell my friends

mary kate said:

I am not a teenager and never had to deal with telling friends etc., but I am a teacher, and kids surprise you many times being more compassionate/understanding than we give them credit for. I have had sick kids in my class (sickle cell anemia/leukemia/severe asthma) and other kids are very understanding and protective. i do agree that she probably shouldnt just say there’s something wrong with her brain…that could open her up for teasing. But if she explained that her blood vessels were not right and may cause a bleed I think other kids would be understanding of it. Good Luck to her! High school is hard enough without any other complicating factors.

Our son had epilepsy (seizures). When he was in middle school, each year, we would draft a letter to each of his teachers, nurses, and coaches stating his condition, how to identify his seizures, what to do for them, etc, and if any of them had any questions to pls call us. Many did to clarify

By the time he entered high school, telling his friends was no big deal. He just said “I can have seizures”. It was like saying “I have diabetes”. A few probably teased him, but he brushed them off (harder for girls I think). His friends knew and understood and no one made a big deal of it.

He played varsity football. His coach (a super guy) just told the team “Hey, if Allen starts acting wacky, bring him to the sideline.” (His seizures were zone out seizures–hard to identify if you don’t know him.)

Being a jock probably made it easier for him. But people that teased him were not his friends. He had plenty of true friends and didn’t make a big deal of his issue. Not being able to drive, he just kicked in more $$$$ for pizzas.

I think it’s important for teenagers to “own” their situation. As parents, we can help and guide them, but they need to learn how to deal with people and their medical issue. When our son was 16, we let HIM make the final call on brain surgery to treat his epilepsy. We all talked the pros/cons (he wanted to do surgery at 14, but we pressured him to wait and try more meds), but in the end, it was his call since he had the most vested in it.

If your daughter has seizures, the epilepsy foundation’s website has a teen chat deal where teens can support one another. Our son posted some stuff there and got a lot of feedback from other teens.

Hope this helps.

Ron, KS