Does anyone else ever feel like the person who should be giving you the most support just isn't.... or maybe it's the person I wish would give me the most support isn't...

I think it's hardest sometimes for those closest to us to be as supportive as we want because they are usually the most frightened by our situation. I have found that I have to be forgiving and understanding and when it really gets to me I talk to them about it. Sometimes our crisis isn't tangible to them and until I tell them what I am going through behind the brave smile on the better days they can't be supportive. And as Jim said...there are lots of people here ready to hold you up.


i’m totally agree with you. Sometime you have o tell the personthat you want the support know your feeling. That person might not know how to deal with the situation themself.

As Jake's mum I try to be there for him at all times, but sometimes I find that he makes it soooo difficult. He pushes me away at times, and won't open up, its impossible to know how hes feeling and what to do for the best. He is a child so its different, but maybe the people in your life are feeling a bit like that. I don't know whether to talk about it, leave it alone or what. Sometimes he wants to talk and sometimes he doesnt, but if I try to talk and hes not in the mood he'll all but rip my head puts me off asking again.
Not suggesting you do that at all, but just trying to give you the perspective of a family member...maybe you need to let them know how you feel, and what they can do for you.
Hope you get it sorted xx

Yes i lost many friends.... they couldn't deal with it....i gives you a lot of pain... but from the people you don't expect they are there the most....most people are busy with there own lives... and after a wile it must stop because it has been so long ago...sorry braindamage doesn't stop....
i hope you have a lot of people that do support you in this time..

It's heart-breaking that the person you expect to understand doesn't - but that other hasn't had the same experience as you - it's unfair to think that person could understand - but like many on this site have said, we all can relate to your AVM experience - some will relate to other AVM-related issues. It's good to know that others have been in the same boat.

I have felt the same way for almost the entire 2 years since my bleed ! Although now that I understand the reason it makes the frustration go away--a little... My Husband, and I have been married 15 years, but he just couldn't deal. He said although he realizes I need support he needs support also in dealing with the loss of the me he had known for 20 years. He tells me I am So different, I'm like a Stranger. Hell, I'm a stranger to myself as well! Long story Sort, Like you said the person we count on most for support! Here, I need his support; he says wait a minute I need more support! In my case I have broadened my horizons and found support in some new places -- I joined some new clubs and met some new friends who only know this me, so I don't feel like I'm letting anyone down

I can totally relate to your situation. As all of us survivers and some who still suffer, we know what we are going through and wish our closest could understand. As they have their ownlives to take care of and their own problems that might be more important, we must remember that God chose this path for us for a reason. Reason being maybe for strength, courage, compassion, forgiving, fighting fears, etc. Whatever it is, we must try to always keep our minds and hearts open to see what the teaching is. It's tough on off days to reach out to those who we think might understand and then get the boot. :( We must not allow this to make ourlives off balance. We need the most balance we can get and however it is we find this peace, Amen! I believe God has a plan for us all. We need to believe in him and in ourselves and help those close to us help us by being patient and courageous with our spirits!

I agree with Julie and Swami Jim. Try to remove 'should' from your thinking. I've had to do this and it has lessened the frustration and brought a degree of peace though if I don't watch myself I can still get annoyed.

The bottom line is we have survived this thing. As for others who haven't gone through this, well cut them some slack as they say.
No-one 'should' do anything, close family are often too close and overwhelmed.

I believe that there is a reason; what that reason is, I'm not completely sure yet...but I have quite a bit of patience =)

Regarding people having their own issues, I totally get this yet despise it. I need some growth in that department.

Hello Melissa, Yes, yes, & yes again! I do understand completely where you are at. I lost a couple of friends and I also lost my husband, who had been "The love of my life". Some people can cope with this situation and some just can't! I really don't expect anyone to understand what I have been through as I know that you can't completly understand unless you have "been there" yourself. This is why our AVM Survivors Network is so important in my life as we have all been there or are on the way to the journey. My family are truly wonderful and do everything than can to help me but naturally they really don't know everything....I don't know or understand myself half the time!! I am just very grateful for those of my family & friends who support me as much as they can and also that they love me! This is my life-line!! Take care & all the very best!

Hi Melissa,
Yes I feel like my husband could be more supportive at times or more understanding. Then we it seems he is I feel like my parents dont get it. I feel like none of them are EVER supportive or understanding at the same time. They claim they get it but I dont think they do. I have asked all 3 of them to join the group none of them have! That alone makes me mad and hurt. I really hate when they say things will be better or things are fine or any other foolish commment when I feel like a loser for not being able to work or totaly provide for my family. So your get again not alone. I know how feel along with everyone else. Hugs hope things improve for you!!!


Yes! They think I use it as an excuse! But when it hurts it HURTS!