Wont someone understand

i just wanna vent im notsure how to understand how family friends can b so close yet so far, and un sympathetic. nobody could can will understand unless theve been through it. they say they do but yet they dont. i dont get it , everyone has an opionion on how to deal with the aftermath rehabilitation emotional struggle physical struggle. i alway think ther on my side and bam they stick it to cause they cant handle the aftremath , not far everytime i think i can lean on them they let me down and im alone with this stupid monster again

Hey Stacy,
Stay strong, nobody reli understands if they never went thru it. Stay strong!!

You are so right no one can understand the monster inside unless they have had to deal with it first hand. I know this site doesn’t replace real human contact or understanding, but I hope it helps you see you are not alone and there are people who are here to listen and support you. I am new to this AVM crap (51 days since diagnosis) and have found that a lot of my family and friends just can’t deal with the fear of the unknown and close and open their hearts. The best thing I did to get through to them is talking to them and letting them know how I feel and how to help me. It also helped me understand how they felt and how I could help them. Oh and drowning them with info also seems to get unknown known. Stay strong chick! You are never alone and if you ever need a sympathetic ear I am here!

:slight_smile: thank you guys. i needed thats sorry for being a downer im usually ok sometimes it gets to me. i wish u all health and happy days in the new year

But there are plenty of us who know what you’re going through. I’ve been there. Sometimes I still feel like I wander this earth without a sould who has been through anything close to what I have. And then I found this group. We’re here, we can talk!

You said ‘people just don’t get it.’ That is right on! People don’t understand because they have not experienced it. And there is on way you can give a disability to understand it!

my family members kept their distance physically and emotionally from me during my 8 year search for AVM treatment. My Mom still can’t accept that this is, in my case, something that is managed–and not cured. The day after my AVM surgery they all acted like I should be “over it” and back to normal immediately–like those years of fear, pain, fighting insurance companies and some doctors who thought they were AVM experts–but weren’t–were magically wiped out as soon as my gurney hit the recovery room. Unless someone has experienced an AVM–they really aren’t capable of understanding–so don’t expect them to. Kim

It’s like an exclusive club, without membership benefits. I’ve gotten used to strapping my alien in the car with me in the morning and acting like it’s not there… And then eventually, it roars it’s ugly head and I look like the foreign one!