This might be weird but my parents claimed to care about my AVM but never showed it. Even when I was in the hospital they would only sit there on their phones and when a nurse would come to give me medicine I would wince in pain my mother would slap my hand or something like that because according to her “She had been in hospitals since she was younger than me and she didn’t cry like a child” even though she never had brain surgery. A few months after I got released from the hospital my mother said “It wasn’t even a real surgery, suck it up”. I never got support from them even today I told my mother that my AVM hurts, I can feel it in my brain, she just got angry at me saying that it can’t hurt anymore and that I’m being dramatic. My father also said that I don’t know what im talking about and that I’m just lazy. The pain wasn’t that bad, I wouldn’t normally tell her these things because of her reaction but today I told her because she asked and I thought that maybe just maybe I would get some comfort. Instead she started to threaten me saying she’s going to call my doctor and prove that it cannot hurt anymore even though the doctor said loud and clearly it can hurt. She isn’t doing this because she’s scared she just sees my AVM as a thing thats making her life harder. I never even cried to her about it, talk to her about it and she clearly wasn’t listening to the doctors or nurses. I was only 14 trying to get comfort from my parents and I’ll be 16 in a few months still chasing that comfort that I never received about anything. This was a rant and I’m sorry if some parts don’t make sense.
Leja,
I am so sorry to hear your story. It must be extremely difficult to have 2 parents who don’t support you. Is it possible for you to call the Dr. yourself and explain your feelings & concerns?
It sounds like they’re actually mad at the AVM, but taking it out on you and blaming you so that they can continue to be in denial. It’s not YOU- you are a brave warrior who is resilient and will learn at a very young age how to advocate for yourself
Some of us take over 50 years to learn this….Keep pushing on Girl!!!
I’m happy you found this support group and please reach out if you need someone to listen! 
on your journey.
I have told my doctor about my struggles, feeling down and all, but the only thing he said he could do was get me a therapist, which would be uncomfortable because the hospital I had my AVM surgery in was an hour away from my hometown or he could put me in a mental hospital, which I didn’t want either. I have my first therapy appointment (which is in my home town) next week and I hope it will help. Still hurts that my parents do not support me but I know I cannot do anything about it, just needed to tell someone. Thank you for reading and replying. It means a lot
You’re so smart to reach out for support. I hope you like this Therapist and that they are helpful. Let me know how your appointment goes if you feel like it. Good luck!
I hope you get on well with the therapist. Try to be patient with the process because I think it has the opportunity to help but I suspect it might seem trivial or not doing much or just far too slow. Give it time: be patient. You’re doing things that most people don’t have to deal with. The maturity that you’re learning is fantastic, though unfair that you’re having all of these challenges at your age.
You’re not alone in having parents or others around you who don’t understand the stress or what having an AVM is like or how long the journey is. You’re right about your parents: they resent the AVM and probably the impact that it has on them: they’re not being as mature as you about it: and they’re perhaps blaming you for the trouble. The reality is that you’re not to blame. Most likely they feel powerless about it and that powerlessness can push people in two directions: to engage with it, learn about it, do something, or to go rather more towards denial.
I suspect they would struggle to express what they mean or why. They’re under the stress of your shared experience and unfortunately it’s coming out in a most unhelpful way. It’s not a unique situation and I hope you’ll be about to talk to the therapist about it.
I know there are others here who have had a husband or wife or boyfriend or girlfriend or parent who doesn’t understand and has been similarly aggressive or unthinking or difficult. I hope one or two will see this story and be able to share some of their experience with you at a similar stage.
It’s hard on you. Don’t be surprised that you’re finding it so hard because it is just hard. There is a whole world of great life to be had ahead of you. Don’t give up.
You’ll also see some amazing parents here – I’ve read an astounding story tonight – but the difference is that where we have parents here who are members of the forum, they’ve come here because they’ve understood the dangers enough, they’ve understood the impact enough and they’ve taken it as a charge that they want to resolve. We don’t get the parents who don’t “get it” here: they don’t sign up. So we have a bias towards the positive, determined-to-help parents on the site; there’s a full range of other parents in the world at large. I think your parents don’t understand how to deal with the situation and they’ve been pushed by the situation towards just wishing it was over, don’t/won’t/can’t talk about it, etc., exactly as you’re seeing. Talk to the therapist and hopefully they can work through ways for you to deal with the situation.
Don’t give up. You are amazing, I promise!
Richard
I’m so sorry about this. Unfortunately it sounds like your parents aren’t well equipped to handle this. I’m glad to hear that you’re going to start talking with somebody.
The people that I know who have been successful in spite of their parents have found mentors/parent substitutes, and typically extended their support base outside of their family.
My daughter is 24 years old, and I’m still advocating for her on mental health concerns whenever she needs me to. I can’t imagine not supporting her in every way possible. I’m glad you found us as one source of support.
Sharon from ModSupport
Man parents can be hard. I also had a brain AVM but it ruptured and I had to learn how to walk and talk again. Since AVM is so rare, maybe your parents don’t know anything about it. My hope as a patient and therapist is that they get a clue. I’m so sorry you haven’t had the support and if you need live online support TAAF is great for that, I’ve never had another place, besides here that has felt like home to me. Where did you have your AVM at? Meaning what location/place? I know it was in your brain. I like to say now that I have no filter. I do think it’s very freeing in that way. Being a therapist and patient myself, I had no idea what an AVM was until it ruptured and I looked it up. Remember to always let it out not keep it inside and build up, even about your support or lack of. And remember wherever you go there are stupid people.
Alicia
Hi Leja
How did your therapy appointment go? Was she helpful?
Deirdre
Hi Deirdre
Sadly my mother got the dates mixed up, because of that I missed the appointment but I have a new one scheduled at the end of the month. Thank you for asking
-Leja
Hi Alicia. My AVM is located on the left bottom side of my head. Your words mean a lot, thank you, I really needed them. Having people who understand what’s it like after a whole year of keeping everything to myself is genuinely one of the best things that has ever happened to me.
You’re incredibly strong for surviving the bleed and the consequences after. Im sorry to hear that you needed to go through that. I wish you the best
-Leja
I look forward to hearing your update once you have your visit!
take good care,
Deirdre
Just know I’m here if you need me. Thank you every day hoping to get better and my support group says “time” which I feel like should be right now, I hate that! Everything takes time, I feel like that is super condescending coming from people who are you able to do everything but without having to think about it, but for some reason, it was different hearing from someone else like me, that was crazy! All the different therapies I’ve had I just wanted to scream that no one knows why that’s like, but I was reminded yesterday of care givers helping loud and asking question out of being angry too. For me was I almost died, the doctors didn’t think I was going to make it at all. So it really helped to put things into perspective for me, and changed my point of view. Guess thinking that there are two sides of every story. Just know if you ever need to talk, let me know.
Alicia