Husband Not sympathetic

[Betty-Jo]

Hi there, I am new to this site and have been diagnosed with full blown IC. I am or should I say I was, a very active mother of 3 very active kids. I am now in the house everyday and have missed so much of my kids sports. My daughter is 4 and she is home with me. As you can imagine this has been a very difficult change for all of us. I am on Elmiron 4x100mg,Elavil and Percocet. I go once a week for the instillation. I am in chronic pain. I have a lot of support from my friends and family but not from my husband. I know this is hard on him but I need him to allow me to go through the grieving stages of a life that I no longer have. He rarely says a thing to me. I was wondering if some of your husbands ever went through this or acted in this way. I am very upset with him for not being supportive and yes I have conveyed this to him but he thinks I am over reacting. I really need advice for my situation. Please help!!

[Sarojini]

Often family members do this -- I know it is so hard. My husband has been pretty good, but my parents have just not "gotten" it yet that this "IC thing" is not going to just go away.

Anyway, I think often family members do this -- withdraw -- because they are not sure what to do when someone they love is diagnosed with a chronic disease. You are grieving for your former life, and your husband probably is too in his own way, but men tend to bottle stuff up inside instead of talking about it like us girls do. I hope that soon he will come to terms with things and you will be able to have a good talk and work things out soon

Also, your hubby may not really understand what's going on with your bladder. It's hard to understand this disease unless you go through it yourself, but a few things might help a little. Has your husband been to any doctor's appointments with you or read any information on IC yet? If not, you may leave some pages printed from this site out for him to read. It may spark a conversation, or at least help him understand what's going on and what this disease is about.

Also, YOU may want to check out our "Ask Frannie Rose" column -- http://www.ic-network.com/frannie/ . Frannie deals with reader questions from patients who are chronically ill, and she has some good advice in her columns about dealing with spouses and family. Just browse through her archives there and you will learn some good tips about how to handle things with your family. I hope this helps

I so want to help you get through this because I hate to see you in more pain because of the strain on your relationship.

[Betty-Jo]

Hi, thank you for responding to my letter. Yes, he has been with me to the docs. He was there when the doc said and showed him the pics of my bladder and said that she has "full blown IC". This all stared in Jan of this year when all of a sudden pain in my lower back which lead to the ER. I had passed a kidney stone there and had 3 more left. I was in excruciating pain. Then that led to another trip to ER. Finally a uro here put a stint in which lead to me being admitted to the hospital with severe hematura. There I stayed for 1 full week also celebrating my 40th Bday there. No celebration, don't remember much. While I was there kept bleeding severe pain eventually a litho and stint removal. My recovery home was terrible. Could not stop the pain, looking back I know that alot of the pain was from IC. But i was not diagnosed with that. The uro sent me to a pain managemnt doc who prescribed ultracet which did nothing for me. Finally, family stepped in to make decisions for me and said that I needed another doc. So I went to Fl hospital for an opinion. Now at this time I had been to the ER at least 5 times. Had a cystoscopy, litho and removeal of stint. The doc there did the hydro thing and showed us the pics. I now know that the pain that I was having for a year had been my bladder and not my cervix like I thought. So.... here I am. So my husband has been through all of this with me. I am not sure why he is treating me this way. I do pray that he will somehow see that this is frightening to me. I need him more now than ever. Thank you for listening.

[traceann]

Yes, I agree with Jen, they tend to bottle it up. Ugh, life would be easier if they were more like women, lol! I know in the beginning, my sweetie's attitude ran the gamut. I got "keep a stiff upper lip, you're a strong person -- you can handle it, don't let it get the better of you blah blah blah". Ok, that helped to a certain extent, made me not take the troubles laying down, but I did need some "comforting" too, not the locker room speech alone, ha ha ha.

Then, I thought he got the hang of it all, jumped on the specialty foods bandwagon, understanding the "no sex" thing, but wham! Blew up a month or so later -- by treating me horribly. After a few hours of asking just what the heck I did to deserve this attitude, it started out as sort of an attack on me!! What the heck? It was "I have this overwhelming feeling to pack my bags and run, it's all about you all the time, what you can eat, what you can't -- I am tired of dealing with this blah blah blah". As difficult as it was, lol, I fought the urge to just unleash on the guy -- I mean, I had lots of my own frustrations at that point in time! I calmly told him, fine if that's how you feel, but you know I deal with it 24/7, 7 days a week -- be in my shoes. After calmly telling him "whatever", he started to open up more and more, he missed the way things used to be, he knows I try really hard to keep myself on the right path etc, he was just frustrated...." That's all well and good, but um, for me, I would have preferred that he just tell me those things, instead of being a jerk to me all day and upsetting me -- which aggrivates my bladder even more! But that was his way of "venting" -- I think we need to find him a new way! HA!

Things are one day at a time I guess for all of us, the patients and the spouses/partners etc. Just wanted to let you know, I too have had my share of crazy, lol.

Hugs,
Tracey

[trytosmile]

Oh, can I relate to these stories. Just last week I got the "medication" speech. My uro put me on Detol LA about two months ago and finally I stopped it on the weekend. I was having terrible headaches and body aches. When I told my other half I stopped the medication he went into this speech how I'm self medicating myself, here we go again...bla bla bla. I have a very low tolerance to medications and 90% of the time have to go off them because of side effects, it is always a trial and error period and he knows that, so hum...support is a good thing then but he would run in the other direction rather than be a comfort zone that I needed. I've been off the Detol LA since Saturday and I'm a different person. So now he is all understanding and supportive, because I'm "saine" again.

For the most part when things are going relatively smooth, he is supportive. Needs to be reminded every once and a while my limitations but when I'm having a bad day or a flare he is the least bit supportive, to busy running. I wish he would go onto these boards and get a real feel for what this is all about and see how other spouses deal with this illness but that would take time and that he doesn't have.

Anyway, hope things work out for you. It's tough, no doubt about that, my life has changed so much and so has his (to a certain degree...little selfish) but I just move forward. I started out with this illness on my own I can do it on my own now.

[Babs RN]

I have been diagnosed for almost 3 years and my hubby is generally a jerk about the whole IC, and I had kidney stones as well, thing. He has his supportive days, but since he is Mr. I Have Only Been Sick 3 times in my life, he doesn't know how to react. He is also in the Army which perpetuates the suck it up and drive on mentality. I also have a four year old and know how active they are. My hubby is currently in Iraq--so the sharp bites are usually on email or a quick phone call where he has let everything bottle up and just unloads and apoligizes later. I am supposed to have surgery on the 23rd and my Dad is flying out from Florida--so I bought tickets on the same flight back to fly back to spend sometime with my parents--and rather than how are you on Mother's Day, I got an email that chewed me out for how much I spent on tickets, why I hadn't I consulted him, yada, yada. So I know how you feel--and if you need to vent, let me know.

Hugs,
Barb