I have an AVM on my left ear, scalp and salivary gland. I had embolization and surgery in 2007-lost the top half of my ear–but the AVM came back anyway. My family NEVER acknowledges the fact that I have an AVM , never ask me how I’m doing or if I’m in pain,etc. I don’t want to talk about it very often but NO ONE has mentioned it at all since 2007. And so I don’t talk about it either. I’m just wondering if this is common in families of the rest of you with AVMs? Kimberly
Hmm...some people try to "normalize" the situation...they might think they're helping you "get back to normal" if they don't bring it up. If you don't want to talk about it, they won't call attention to it, seems to be this kind of attitude. If this is the case in your family, it doesn't mean they don't care, just that they don't know the best way to care for you. There are some good threads here on communication; you might try searching for those for some tips.
You can help your family see what you need by not repressing the things you need to say about your AVM...you can show them what "normal" actually is, by feeling free to talk about it whenever it's on your mind. It's hard if they make it awkward, but someone has to break the cycle. Remember too that AVM talk isn't always heavy and emotional...at my house, we have AVM jokes, minor AVM annoyances...little things that make the AVM part of daily life instead of a scary, unspeakable thing. I've noticed that casual talk about a serious health issue makes some people feel awkward, but it often breaks the ice so people start asking questions and learning.
Well, I’d be interested in hearing your AVM jokes. The only one I’ve been able to come up with is " Hey, I’ve got the perfect excuse for not remembering what people tell me–because I was only listening with half an ear" ---- literally. So let’s hear your jokes. Kim JH said:
Hmm...some people try to "normalize" the situation...they might think they're helping you "get back to normal" if they don't bring it up. If you don't want to talk about it, they won't call attention to it, seems to be this kind of attitude. If this is the case in your family, it doesn't mean they don't care, just that they don't know the best way to care for you. There are some good threads here on communication; you might try searching for those for some tips.
You can help your family see what you need by not repressing the things you need to say about your AVM...you can show them what "normal" actually is, by feeling free to talk about it whenever it's on your mind. It's hard if they make it awkward, but someone has to break the cycle. Remember too that AVM talk isn't always heavy and emotional...at my house, we have AVM jokes, minor AVM annoyances...little things that make the AVM part of daily life instead of a scary, unspeakable thing. I've noticed that casual talk about a serious health issue makes some people feel awkward, but it often breaks the ice so people start asking questions and learning.