Support for Husbands / Boyfriends?

[ICsmiles]

Hello, my sweetie and I have been together for several years. He knew I had IC from the start, but i have gotten dramatically worse over the past year. We have talked about finding support, especially for him because I have support resources. He needs to talk about this with other guys, and i was hoping that is what this area of the boards was for... but I dont see any significant others on here posting about how IC has affected them or their relationship. I know he has got to have some major feelings about how this disease has taken away his fun-loving partner and turned me into a home-bound person who is often in terrible pain. He has been so supportive and loving with me, he has taken me to so many dr appointments and tried just about everything out there, and we have finally given up as far as a cure. I know there has got to be some anger and grieving and other feelings involved and he doesn't have any place to express that. There are no IC doctors or support groups locally, and although eventually I would like to start a support group, right now i'm too sick.
So, are there any husbands or significant others out there who would like to talk to another guy dealing with the issues of seeing the person he loves go through this terrible disease? And taking her to doctors who sometimes just make it worse, and feeling powerless to do anything.... Not to mention the times going alone to a planned event because your loved one is in too much pain to go.... :(

[callie0767]

thats a great idea for a new thread.maybe jill will read this and start it for us.
courtenay

[ICsmiles]

thanks for response courtenay. cool name.
there must be a place for family, hubbies, care-givers of IC'ers to talk about their frustrations with this disease. I know my guy is going through some disappointment, even anger, because my life, and his life, has been so limited because I can't do things with him like I could before. Sometimes he ends up being like a nurse, helping me get into bath, bed, getting water or meds. kinda takes the romance away, although we still do all right. But I can imagine how great it would be just to commiserate with another guy in the same boat, and ask questions and share info just like we do.
hope somebody sees this and we get some response.
thanks.

[leelee88]

This would be a good idea, if we could get are other half to post is the thing..lol

[Claredale]

Yes, that would be the problem for my hubby. He is very supportive, but I just can't see him on here talking about it. He goes to my appointments when he can and he definitely keeps his mom from causing me stress anymore. I am certain that he has issues when I don't feel like getting out much anymore. I am content to just go home from work and find my heating pad and relax for the rest of the night. I do try my best to go out to a movie or out to eat every week or so. He does see that I alot of times I pay for it later, and he makes comments that he shouldn't have asked me to go, but I tell him that I really need to get out and the meds will eventually make it okay. It really can be a sad life, so I can definitely see how our significant others are feeling!

Sorry to be so depressing, I am just getting over a bad flare, so the glass is half empty today. My hubby's birthday is this weekend. I am glad that he will be going to play golf with a group of men on Thursday and Friday, so hopefully I can work up the strength to enjoy his birthday. Mine was a couple of weeks ago, and I was a mess. We did good to go out to eat and I went home and went straight to bed!

Tracey

[hdb1982]

I think it would be great for them but to convince them that and get them to actually post would be another issue. sometimes I find him researching IC online and showing me new things he finds so atleast he is trying to understand.

[ICsmiles]

wow. thanks for your feedback.
I have a friend with IC who just told me her husband doesn't believe her when she is in a flare and is upset with her... my heart goes out to her.

I EVEN FORGET MYSELF how bad it used to be in my former marriage. It only lasted 2 years. Maybe because he would SULK and become silent and scary - if I couldn't have sex. One weekend I was in so much pain I went to Urgent Care for help and when I came home he was frisky and rarin' to go. I was on the couch curled around the heating pad and when I said, "are you kidding?" he got angry and wouldn't speak to me the rest of the day.

I have such a loving guy now I think I will just thank my lucky stars. He is a rare man -- he won't go out of his way to go to counseling or share feelings -- but when we need to get through an issue, he is willing to do it.

so, IF someday any of the men in your life want to just have another guy to complain to about this awful disease, at least I (and he) put it out there!

[SandyRN]

I would love to find a support group of some kind for my fiance. I think part of our problems lately is that he doesn't know how to deal with my illnesses. I haven't been sick the entire time we've been together, but probably at least half of it. Sometimes what I see as being cold is probably his not knowing what to do or what to say to me anymore when I'm in severe pain.

This board is MY place of salvation and I don't really want him reading here, for obvious reasons (if you've read my recent posts) but, I was thinking there is probably an actual support group for spouses/sig. others of people with chronic illness/chronic pain, at least in major cities.

I'm going to do some checking online and see what I can come up with....

[leelee88]

That would be great Sandy, I know my husband would join, even though he is wonderful and tries so hard, just like your fiance. I know sometimes he needs a place to vent..This disease puts a big strain on him and I do understand that.. And I know you do to.. Maybe if we can't find a great board for them we can trust, we can get Jill to help us create one..What do you think?

[SandyRN]

I think that's a great idea Ronda!

[ads]

I think it would be great if people would bring their sig. others to support group meetings. In one of the support groups in Florida and another in Philly it is the norm for couples to come together. Many times one of the most popular topics is sex and coping with IC.

I wish everyone the best as IC can take a huge toll on people's lives.

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[Berkshire Road]

I know exactly what you mean, Sandy. I really don't want my husband hanging around this board where I talk about him sometimes, and I think he would also feel very inhibited about writing out his real feelings on a board where I could read them. But a separate board, now that could really help. What a good idea, Ronda.

[ICsmiles]

I was just thinking if there was a way they could make a connection and then just email or even phone numbers, rather than posting on the board at large. Just to talk to another guy, or family member of an IC'er going through a similar situation. I think it would be a relief and take some strain off me if he could just hear someone else say, "I KNOW WHAT YOU MEAN... she always has to pee, or sex is iffy, or I never know if we can really go to xsxxxx event, or, I hate these doctors who do xyz and make promises... and then when the treatment doesn't help, its even harder..." That kind of thing....

[irishnan3]

Hi, I was wondering if there has been anything further on the Man Board..lol
I think it could really be a good thing. I know my hubby would check it out. I think if we could just get them to go on and look they would follow suit on what was being said. It would be nice to get it going......

[roho]

I'm a husband and I know there is a need for this kind of board. This is a very tough thing to deal with, not to take anything away from what our wives are going through. Every day that my wife is experiencing a flare up there is such a mixture of depressing emotions. Sure their are physical desires, but I'd give that all up to never had to see my wife in pain again. I'm also a very active person, and of course as we all know, during a flare up, my wife could be on the sofa for 6, 7, 8 months! That creates a real emotional separation sometimes.
As spouses of someone living with IC, I think we can all relate to the countless stories, we've all been through them. I'm sure we could all agree that there are many moments we could have handled better.
Lets Chat!