Just a question to u - I was re-diagnosed with an AVM after my surgery in octobre - and as u can imagine this diagnose really shocked and tore me down , though i thought this chapter of my life was over and I was done woth this fuck er in my head. Sitting there in hospital after my new/ old dignisis - my "best" friend called me to ask whats wrong coz she read my FB stats. And as I rtold her that they found dth again and that i possibly need to have another crani - she told me: "Oh - but don´t lament urself to coma, like last time. !" First moment I was speachless - but yesterday after she said the same again to me - I freaked out - she told me come on - its only a small thing in ur head - !! I cant believe how someone could say this?!???? I would never tell this to m yfriends - not even to a stranger - wtf ???!!!! Am I too sensitive in this case - what do u think???? I told her - ok I dont wish sth bad to anyone - bit I said - I wished they all would have to live with such a diagnosis - only for 5 minutes - so they would know how it feels - what happens inside u - !! Sorry I just had to vent.....
I´m so rid of people telling me how I should feel - or not feel and what I should do and how I should act - and the best ones are those who ask if its cancer - and when u say No - Not cancer - aaaaaaaaaaaaall is ok and u have no problems anymore.....
Hi Manux. You friend is insensitive as well as stupid. Your friend should be careful with her words because Karma will get her. I’m not wishing her Ill-will but Karma doesnt know that. As I have gotten older, I am very careful with my words because they can be very powerful when spoken out loud. I’ve seen it time and time again when people are critical it comes back to them double. We all can understand why you are upset and we are rooting for you. God bless.
Girl....if you only knew! You are most definitely not alone! ......at least your friend called you. I thought the same about my sister. Maybe she would shut her face if she could experience one second of what I was going through! I didn't have friends say to me what she said to you (something I would attribute to her ignorance) but I did experience something similar, actually quite a few times I had similar experiences with people. I was treated by some like I was the one making having a stroke and brain surgery more serious than it really was or like I didn't deserve sympathy or empathy or any type of emotional support because this was all in my head- no pun intended. I think what you experienced with this friend of yours is just another challenge us AVMers must face. It seems everyone of us have had at least one person kick us while we were at worst in all this. I'm sorry you're experiencing this, it doesn't help recovery at all. But you can either accept and forgive her for her ignorance, hoping she never has to go through something like this because she doesn't sound like she would be capable of handling something like this (a reality evader) or you can be bitter and hold it against her, eventually doing the same to anyone close to you. I wish you the best of luck. I'm kind of a grudge holder but I have come to realize that sometimes...you just gotta let people be stupid without hating them for it.
She doesn't understand what you are going through, obviously. When I first found out what I was going through, my sister thought she knew more than my doctors, and also thought it was a cry for attention. Her and I were not getting along so well at the time and I *thought* this would bring us back together from our silly argument we had. So, she emails me a bunch of WebMD links and says, "My friend had brain cancer, this is nothing." I went through my brain surgery, neither her or my mother were there afterwards to greet me in the recovery room. I had a grand mal seizure, my mother was "sick with the flu" and she couldn't visit me in the hospital, no phone call or email from my sister at all, but my mother assured me that my sister "cares for me very much and is very worried"....
All I have are my husband and children and a few friends who worry. That is all I need. Don't worry or waste your time on "friends" who you want to care about you. Focus on the ones who do. All the others can go pound salt. YOU worry about YOU. Don't get yourself upset over the others. It's ot worth it. Take care of yourself and know you have a whole support system here!
Good lord, Manux...I'm very sorry to hear. I can relate...I thought that I was somewhat out of the weeds (other than the everyday stuff to deal with), but then I discovered this Ataxia form (long story)...so it's kind of like starting all over again (and I'm currently jumping around the stages, but tend to keep going back to the "This totally sucks!" part). I'm glad that I documented some of my process of rehab., etc. and that Ben has a rare disease Ataxia site support group online!
The way that I sometimes look at it is that I obviously missed a message the first time through something like this, or it's an opportunity to fully engrain the first lessons learned.
Regarding your one "friend", I consider friends like a bouquet of flowers in that each one is different - having their own opinions, etc. This particular "friend" might have a strength other than listening or understanding...I chose to take the high-road on that one.
Hope your bouquet is diverse and not overly smelly with skunk roses! =)
i can so relate julie, ever since i was diagnosed
my phoene never rings anymore since i cant "go out"
anymore my “freinds” have no reason to call. Now as
for my family no support there either .my last seizure was on easter ii
had two so lately i have been a guine pig with seizre
meds so i feel like crap right now. i called my mom
one dday said i didnt feel good to come help mme
with the kids she said i was being lazy and should not of had kids.
i havent talked to her n two weeks i cant stress about
that right now… but i do have the best supportive husband n
kids. Julie dont stress that “freind”. its is taking mme awhile to realize
we cant make people understand as long as
they ignorant to having something wrong with
them they will live in their happy bubble…
i can so relate manux,ever since i was diagnosed
my phoene never rings anymore since i cant "go out"
anymore my “freinds” have no reason to call. Now as
for my family no support there either .my last seizure was on easter ii
had two so lately i have been a guine pig with seizre
meds so i feel like crap right now. i called my mom
one dday said i didnt feel good to come help mme
with the kids she said i was being lazy and should not of had kids.
i havent talked to her n two weeks i cant stress about
that right now… but i do have the best supportive husband n
kids.
manux dont stress that “freind”. its is taking mme awhile to realize
we cant make people understand as long as
they ignorant to having something wrong with
them they will live in their happy bubble…
People can be such insensitive jerks sometimes, which is why I treasure this group. I've been dealing with this "illness" for almost seven years and have seen the true colors of people I thought were my friends, as well as certain family members.
Some people just cannot deal with illness, others are just too into themselves to think about the feelings of others. We have so much to deal with, Manux...we don't need the extra pain they are heaping on us emotionally!
Sorry you're having to go through this again! I can relate as well, especially the cancer part. I had a parent from my daughter's soccer team say to me (when I was still mostly bald after my bleed/crani) "didn't you have cancer or something?" I said "no". He said: "Oh, so it wasn't that serious then". I almost completely lost my sh*t with him. Luckily my husband was there and quickly grabbed me before I could speak. Or hit! People are insensitive and ignorant to what they don't understand. I feel sorry for them.
People can have the best of intentions and say the most hateful, hurtful things. I certainly don't know all the circumstances and I won't even pretend to. Chalk it up to them not knowing about AVMs. That's why she knows about Cancer and knows nothing about AVMs. Put the "small thing" in her brain and see if she still feels the same way. It's all perspective. Just focus on the love, and take care of yourself. This site is chock full of people who know what you are going through. Don't waste energy on those who don't get it yet. Maybe you can educate them (awareness), but you certainly don't have to. And like Zilly74 (thank you) said its not worth getting upset over. You have this site for those that understand when others who should, don't. Vent anytime. :J