Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group No Support from wife!

Hi,

I'm 35 and been sick since 2005. I found out I had AS in Feb. 2009. I've tried Humara, Enbrel, and now I'm on Remicade Infusions, Methotexate injections, Lefliumide plus many other vitamins. My SI joints are bridging (very close to fusing) according to the last MRI(Dec. 15th 2010). I've had 3 knee surgeries since 2005 and I'm going to have one next week. I'm in alot of pain from my AS and my knee. I'm also scared I just got back my live function results and they were very elevated. My wife does'nt want to see me grimmis in pain when I get out of bed or bend down to pick some thing up. She instantly gets angry. Is anyone else having this problem? If not give me some advise on what to do.

so sorry to here about all the pain. glad to meet you.

i'm hoping that your wife is more mad at the disease than at you, maybe talk to her, if the two of you can share your fears, maybe that would help? i am lucky in the spouse department, so what works for me, might not work for you, but do find communication to be an important component of our relationship. that and mutual kindness.

She sounds scared.

Sometimes it helps if she comes with you to the Rheumy's apt. That way she will get some idea about what is going on. I do think she is worried about what this could lead to. She is afraid that you will always be in pain. Give her time to read and study about AS.

Hi, Northernboy:



She sounds like my own Wife Number One.

I have since remarried and have a wife who actually helped me to get better--she participated in every aspect of my healing from her fervent prayers to her NO STARCH NO NONSENSE COOKING.

Now I have to pay my dues and visit her family in Philippines for four months--that is a small price to pay, especially since I am so fond of them and bringing one friend...wish I could bring more!

HEALTH,
John

Sounds rough with no support. Does she usually support and every once in awhile get mean? I could understand that a little, since noone is perfect. Or does she harldy ever support you and always say something mean when you are in pain? The best thing to do is be honest with her tell her you did nothing to get AS and ask why she says the things she does. Sometimes making someone accountable for the the things they say and do bring it out and open and there can be some resolution to the matter.
I hate conflict so I would probably not bring up the discussion, but you know how it is, it's easier to tell someone else what to do.
I hope you get feeling better, I'll say a little prayer for you today.Take care,
Sheri

It's peculiar how folks show their concern.
My husband appears frustrated and angry with me when I am in pain yet again (or still)and I find myself hurt by (and angry with)him for his reaction. But then I hear from my friends that he is so very concerned for me and scared, and angry with the doctors because they can't do anything for me. He tells other people these things, but he doesn't tell me. I think he just don't want to burden me further with how my pain is affecting him.
It's a viscous circle, but I really don't think our loved ones are angry with us...they are angry with our pain. Just like we are. They just don't have the same practice dealing with it.
Sue is right...communication is important.
Gut reactions rarely tell the whole story.
Hang tight. There just might be more support there than you think.
In the meantime, you'll find plenty of support here.
Tracey

Hello there,

These posts unfortunately regarding family come up often. As I do not know all the dynamics, hard to say for sure what to do.

Communication always helps, and education. As someone pointed out before, she may be scared.

Hope you can get her to understand.

Fortunately my wife is a saint.

Tim

My wife is one of the most supporting people I know but at the same time it must be really really hard. She not only has to help me, and worry about me but she has to work and help support our family.The amount of stress coupled with the "whines and gripes" can be alot to take. I know this isn't the whole situation but it definitely can contribute.

Hi there Nrthernboy - I go along with the others here, your wife sounds scared (what will happen - children - don't 'understand' this disease - and even 'possibly is afraid to understand? - etc etc) and is out of her depth.

The suggestion fr your wife to accompany you at a rheumy meeting is a good ne - if workng, try to plan around her work load, invite in the support from your consultant rheumatologist. aS is a heck of a handle to get a grip on, not just for us spondys but also for the family members: the whole hows, whats, whys, what-ifs of the AS 'coping' situation, can be scary.

Try to draw your medical team behind you to try and help your wife deal with the fears of the - your - AS poblem.

Might help if she could be encouraged, by outside medical team effort - to understand 'what' AS is. Heck, even so many docto are unable to comprehend 'what' AS is ike to live with - and they have a medical qualification...<'Smile'.

Difficult to cope with family emotions and incomprehensions together with being a spondy! Friends can't understand, and just as diff for family membeers.

Positive thoughts for a resolution to the problem.. You love each other...une grande baisse for each other.