Husband support ?????

[roktta06]

Hi everyone (married or with partner) this is kind of difficult for me to post because it is a very sensitive subject for me buuuut, I was wondering if anybody with Chiari has a partner or husband or boyfriend or whatever that does not understand your condition and makes your life more stressful and difficult for you. I DO!!!!!!!!! I do not know if this is the right place to discuss this but I really need to know if I have an insensitive husband or there are a few out there!!!! This upsets me so much that my stress level rises and things (symptoms) get worse!!!! I know my husband loves me a lot but WHY WHY does he not understand. I have send him articles about Chiari malformation…depression and he just does not give a damm….. he has gone with me ONE time to the doctor but I have mainly just be along with my CM. I have been married for 20 yrs now and he married me knowing I had this…
Imagine my depression i have to attend seminars to jump up my self esteem because I can not believe that the person the loves you the most does not care!!!!!!

:(

[cash242]

I also feel for you and would be very hurt if my husband wasn't understanding so your feelings are validated.  I have been suffering for 5 years which I know is less than many but this last year was the crux with decompression surgery and another on the way and what I didn't realize was that our whole family had to change.  We too are extremely active we dirt bike, rock climb, snow and water ski there is never a dull moment but that doesnt work for chiari.  I obviously stopped doing these activities but would be so sad to miss out. I think it takes awhile to understand that this is a life altering condition that is not changing.  That means that what you do as a couple and family changes and that is really hard.  Family dynamics change. He may understand but it also means that he has to change and that is a hard thing.  Maybe if you slowly change and take things out that it will be easier but I also had to learn to say I can't do it and if you need to go without me its ok. Hang in there it sounds like he cares but maybe hasn't truly accepted the changes that both of you need to make but most important dont sacrifice yourself you have to take care of you!!

[Sexybare]

I feel what you mean. My boyfriend is very sweet loving and caring but 10 days after my surgery he shattered his collarbone and had a plate put in and ever since its been all about him. I cook clean do laundry and run arrands since he got hurt. I never had recovery time. My family thinks im fixed and fine. Im angry because until they walk in my shoes they have no idea whats its like to be me. Nobody listens anymore when i try to explain how i feel. Im extrmly frusterated and ready to start cutting off people in my life who dont get it.

[linnielou232]

My heart goes out to you, and I have been fortunate to have a very loving and understanding husband, but some husband's handle sisuation's so differently.  Maybe this is the way your husband has to deal with your sisuation at the time, but give him time and I'm sure he will come around.  Right now you need the love and support of your family.  Him not understanding your sisuation is I'm sure very difficult for you both.  Hopefully he will do some research on his own so he can understand what you are going through.  Some men think if they ignore the sisuation it will go away.  Ask him to read up on this and maybe this will help him come around.  If he love's you like he say's maybe he just need's to have a little time to obsorb what is  going on.  I wish you the best.

[selmaS]

  Try  talking to him about his feelings, and let him know u do not expect him to fix u...and that in moderation u can still do and go most places and  if u work together u will enjoy some of the things u both consider important.

I used to get that b4 I was dx'd as well as what do u want me to do about it....

just try to understand he is scared and frustrated too...and not really angry at u, even tho it seems that way.....

  Let ur DH know u understand how u feel affects him too...he may come around.

   "selma"

[roktta06]

Thanks for your lovely words.... I know my husband prefers not to think about it than face the fact the he might lose me... I have lived a very very active life... and almost NEVER complained  about pain even though I was about to pass out, because I did not want to be a burden  my family mostly  him. We live a very social life and he just gets so angry at me when I do not want to go to a dinner party because I have pain!!! Sometimes he gives me the silent treatment and does not speak to me for days because he thinks I did it on purpose. I feel I am just living my life for his pleasure  and if his life is not "Cinderella Perfect" he bails out. I have talked to him soo many times about my feelings and he just does not get it! I"ve even asked him if he wanted to bail out he could I would understand and he does not want that either!!! We travel ALOT!!!!!!!!! and when I ask him if we can slow down a bit and let me catch my breath ...there he goes again...anger!!!! JESUS! I am writing this and tearing up! Lately I have been having problem with my ears and his response is...NOW WHAT??? :(

[selmaS]

  Hi...we have had many members with the same situation as u, I am lucky in that my DH went to Dr appointments with me, and researched this condition on the web...so he knew what it all was, and I went our whole marriage with something that just was not right and Drs never got it right.

But, what u do need to keep in mind, ur family is not medically trained and they do not understand this, that is understandable, what gets me fried is there r NS's and other Drs in the field that do not understand it...so if they don't get it how can we expect our family to?

I know what we really want is their support, even if they do not understand all that is going on...but the flip side to that is they r afraid, just as scared as we r, sometimes our male partners take it worse as they feel the need to protect us, and fix us and they can't.

I have a picture of my DH lying on the floor just after I got home from my surgery, I called him my warden bcuz he would not leave my side,...he was sleeping on the floor by my walker....

Give ur DH the benefit of doubt, if u know he loves u, know he cares, he is just scared .

    "selma"