I have multiple extremity avms, I have suffered with them for years, keeping the pain under control with strong meds, but when people learn that I am ill, or DISABLED as they say here in the uk, I am blanked out and critisiized for not being LIKE OTHER DISABLED people, in that I am mobile (just) I just don’t let the pain take over. I am strong inside dealing with this but the pressure I am getting from neighbours is getting me down. Any suggestions please, perhaps a car sticker!!
Hang in there Karl..Living on pain meds to get thru the day is not any fun..When people find out that I have an AVM they also look at me like as if to say *You look perfectly normal...soooo whats up*Just walk a moment in OUR shoes....Grrrrrr...Keep up the fight,keep smiling and don't let others get you down..You are not alone.
I myself, when it comes to people I don't know...I don't care what they think! They don't know me that well, they didn't take me to the hospital, they never picked up off the floor, they never sat next to my bed wondering when I was going to regain consciousness, they never helped me in my house when I was siezing. So, I don't care what they think. I'm not being smart about this, I just don't concern myself with what other's think.
For the people I do know, I simply tell them that I suffer seizures. People understand that better than if I tell them I have an avm. And then they ask me "Whats that?" So, I just tell them I get seizures and that normally satisfies them.
My advice would be...get an "I don't care attitude" of what others think. Because they have no idea what is wrong with you and if they cared....They would ask you. For those you do know - Just tell them something that is related or a symptom of your condition in a way that they can accept it.
This is how I handle things, I hope it was of some help for you. :)
Hi Karl,
I like Ben's approach. I think a lot of times people who have medical conditions have to develop thick skin.
Unfortunately some people react to the unknown and whatever causes them fear with more fear, and thus ignorance. Sometimes when people are rude, or stare, or don't understand it can be an opportunity for us to educate them about AVM. On the other hand, to some, having to do that can be an added burden and get very wearisome. Not everyone wants to have the 'responsibility' or 'chore' of cluing in every person who doesn't understand, and especially those who don't even want to be educated.
You already have enough to deal with with pain and everything else that goes with this, so don't let people who may be blinded by fear bring you down and take any of your energy. Save that for the people who do care about you and who do have an idea of your condition and what you're going through.
If there are people around you who are criticizing you because you're disabled or for any other reason regarding your condition, if you think they are someone who would be open to learning something, and you feel like investing that energy in them, then that could be helpful. But if they're just negative people who wouldn't 'get it' anyway, then forget them and don't let them bother you!
You know you're doing the best you can. Spend your energy on those who have enough decency and sense to at least get educated on your situation before they come to any conclusions.
Just because some people may 'blank' you out DOES NOT make you invisible or less than anyone else. You always matter as much as anyone else does.
Keep your chin up, and stay strong. Anytime things are rough you can come here and vent.
Thanks everyone, its a help to know that there are people that understand. I will take a bit of advice from all of you.
Tori- Good point! I really like how you put that. 