Anyone got any advice for a partner?

[J. Strange]

My girlfriend, whom I love deeply and plan to be with for as long as she'll have me, is an IC sufferer. I had never heard of the disease before I met her, and I feel a responsibility to educate myself about it since it affects her life so significantly. She's told me some things about IC in general, and whenever it's interfered with our dating or sex life, she's explained the flare-ups and urgency. I don't think she's very comfortable talking about it with me, though, and I didn't pay close attention to what she was telling me in the beginning anyway (I'm sorry to say).

As far as symptoms, treatments, and the like, I'm trying to teach myself as I go along. What I'm more concerned with is the little things that medical journals and websites leave out, the day-to-day things that I as her lover should keep in mind. I've learned to avoid restaurants that serve spicy foods, for instance, but what else can I do to make my lover more comfortable or at least show that I sympathize with her? I've never had urinary problems before, and I have no persistent disorders of my own, so it's hard for me to put myself in her place. Thanks in advance for any suggestions or encouragement you have.

[Cricketmk3]

You've come to the right website! I admire you for taking such an interest in your girlfriend and the disease that she has. That in itself is a great support for her. Just read this site and the message boards and you'll gain a world of information. Keep up the good work. Your girlfriend should appreciate very much what you are doing for her!!

[Betsie]

http://www.ic-network.com/handbook/

http://www.ic-network.com/

The Interstitial Cystitis Survival Guide' by Robert Moldwin, MD (2000)

This is a great place for information...the links above will be worth bookmarking and give you many answers to your questions and possibly to some you didnt think to ask. :)

The third link is probably the best book written by an IC specialist. You and your partner would really benefit from having a copy of this, it is available at the ICN shop or in some bookstores. Its a must have in the understanding of IC. Good luck and welcome! :welcome:

[dyno]

One thing I am going to bring up is travel. When you travel with her realize that sometimes that can be a real tough time for an IC'er. There have been times my husband has had to stop every 10 minutes for awhile on a long trip. In times like that if you can be as understanding and helpful as possible, she will appreciate it.

Reading the info that Betsie gave you will help a lot to understand IC. You are a special person to want to learn about it.

[classics]

Your girlfriend is very fortunate to have a terrific, caring guy like you. Just offering emotional support will go a long way to help the IC patient. Self- educating is the best thing you can do. Also, though you may at times get frustrated because you can't really do to much directly to help her, you can be a good listener, if and when she complains about pain. I suggest that you come along to her doctor's appointments. If it's okay with her, you can be there if she has any procedures that cause discomfort.

[stacey79]

How wonderful that you are educating yourself to help your girlfriend. I applaud you! :)

There are little things that my husband does that I especially appreciate. For example, if we are on a car ride, he will check with my to see if I need bathroom breaks. This is especially nice when we're with others and sometimes I hate to keep speaking up about it. He will also make sure that if I need to sit down when we are out somewhere that I can find somewhere.

One other thing was dealing with the diet. I don't know if your girlfriend has experimented with her diet, but it overwhelmed me. My husband went with me to the grocery store one evening and we spent about an hour reading at labels and all. He still will check labels for me on new food and also tries to make sure that if we are going out to eat (especially with others) that I will be able to find something.

I guess, if you just think of it as always feeling like you have to go to the bathroom really badly (like first thing in the morning, maybe), then you can get an idea of how some of us feel a lot of the time. And try talking with your girlfriend about it. Ask her what she needs from you. Maybe she just needs you to listen sometimes. Maybe she just needs to be able to give you a signal and have you know that she needs to sit down or something like that. If you let her know that you are ready to listen, not necessarily give advice, and just want to be there for her, then she might feel better about opening up. It can be a bit embarrassing to talk about going to the bathroom and bladders!

Anyway, it's wonderful that you are on here. You will find LOTS of wonderful information! :)

[traceann]

I have to chime in with the rest, she is a very lucky girl!!! What I appreciate from my boyfriend, is being asked how I am at any given time, especially when I have gotten "quiet", lol. I hate to keep sounding like I am complaining all the time, so I generally keep it to myself, and just paste on an "I'm a-ok smile", and it's nice to have someone aware that my demeanor has shifted, without me saying a word.

As of just recently, he has now decided to start paying close attention to what I am ordering when we are out to eat, as in reading the food descriptions, lol. We went to Applebee's, and I decided to I wanted shrimp. Ok, fine, then I see they have a caesar salad, that you had your choice of meats, I chose the 'garlic crusted shrimp" -- don't ask what the heck I was thinking, for some reason I had a grilled type thing in my brain at the time. Well, I get the thing and realized I forgot to say dressing on the side, so I can just dip my fork in it, and I see the shrimp are deep fried (ick, don't like deep fried shrimp to begin with) in a batter that looks like all black pepper. I tried one, yuck. So, there I am, trying not to be a bother, politely picking it, just the lettuce drowned in dressing and praying I get magically filled up quick! lol. And in the mean time, he kept telling me, "let's just get you something else, I don't care what it costs, I want you to be able to eat", and dingy me, just kept saying no, I'll be fine blah blah blah (I hate feeling "different" all the time, so I just wanted to be as non-difficult as possible). Well, next thing I know he's calling the waitress over. I was a bit embarrassed. He explained to her, that because of my diet, I couldn't eat the entree, and could we order something different, and he was understanding that we would of course pay for it. She said, sure, but don't worry, you won't be charged for it, and she made me a new salad with GRILLED shrimp and my dressing on the side! I could have hugged her,lol. But I loved him more for doing that for me, knowing I try to be as complication-free as I can, without putting anyone out, don't want to be a bother.

So, I guess in that story my point is, sometimes it's hard for me to be "pushy" about what I can do, what I can't, what I can eat, what I can't etc. It's nice to know that sometimes he'll be the "pushy" one for me. Does that make sense?? Takes the pressure off, especially when I start to feel like people will see me as just a big whiner or baby, the ones who don't get IC. And there are a lot of them out there too. Nice to know I have an ally in it all. And it made me feel really good the one day when he was discussing what he would like to see for me, by way of doctors, after we get married and I have good insurance. He doesn't speak of it alot, so I was totally unaware that he was thinking on it so much, really made me feel good.

Hope this little bit helps you out in your quest! I hope to introduce my sweetie to the site someday, so he can get more of a feel for the challenge that is IC, from everyone's perspective, not just mine. Some days it would just be so much simpler to be able to just say, "oh yeah, my arms hurt all the time, see the marks/wounds?" But it's not so easy when it's your bladder and people can't see any "marks/wounds" or reason for your pain/discomfort, it's hard for them to grasp.

Goodluck, and take care, keep up the good work!!!
Hugs,
Tracey :)

[Katrina]

:) I don't think I could be happier seeing a post from a loved one wanting to learn more about what it is like to live with IC! Posting here and asking to try to learn is an ammazingly helpful move...you have taken the right step.

For one thing, IC is not the same for everyone....so your partner is the expert in what it is like because we all experience it in our own way.

I find car rides painful...I am helped if we go slower and I sit on a pillow.

For me I would appreciate my man learning about what would make sex more comfortable...since that is something most men have difficulty with and most women have difficulty explaining.

http://www.ic-network.com/forum/showthread.php?p=90935#post90935

ICers can be sensitive to anything ...figuring out what bothers us is often a big part of the process of feeling better...the more people in our lives understand that the better we feel.

I gave you a link that I give to all newbies...it has a lot of lifestyle changes and ideas of things to do that help out.

Thanks for your efforts.

[diane57]

You are SUCH A GREAT GUY!

I have to second something traceann said. One of the nicest most caring things my hubby does for me is to ask every so often, Hey, how does your IC feel? I don't want to complain too much, but on the other hand how my bladder feels is often the number one topic on my mind. If I've told him I'm in a flare, he asks more often (maybe about every 2 or 3 days) and if I haven't complained about it for awhile he still asks occasionally (maybe about once a month). Then I babble on about this and that and he just listens sympathetically. It makes me feel SO cared for; I never care that he can't offer a solution, I just love it that he asks how I am and listens to what I have to say. And if I'm feeling really rotten, I appreciate it that he tries hard not to let it ruin his day, so I feel I can tell him if feel bad, or I can just sit and cry for a few minutes while he holds me, without having to repress or soften it in case it upsets him. When I was first diagnosed, he would feel so upset and horrible for me, and powerless to help, he would get grumpy or withdrawn, and then I would feel guilty, and then I would get angry, and then he would back away more, etc., etc. Now it's like he doesn't react by pulling away when I feel rotten, he just calmly listens, and makes little supportive comments and that's so nice. I find that my little self-pity/anger storms pass a lot quicker of I can "get them out" while he listens; it's like the storm then clears up and I can recover my equilibrium faster after I've talked to him about it.

Another great thing he does is to make little jokes about the challenging diet. Like, we have a friend who goes to Starbucks and orders huge coffee drinks with extra shots, and hubby will joke to me "That is NOT an IC-friendly drink..." Or he'll bring me some licorice (one of the only IC-friendly candies), and on Easter he got me a bar of white chocolate that he had to shop around for, or he'll bring me some plain peppermint tea. Just little things that tell me he's been thinking about me, and that he's trying hard to support me as I try to follow the diet and he actually remembers some of the details of the IC diet.

Finally, I appreciate how he's flexible about our sex life - doesn't insist on intercourse if I'm feeling under par, is willing to take other avenues to give us both pleasure. I also love that he still tells me he's attracted to me - one of the worries I had at the beginning was even just the concept of an inflamed bladder and its symptoms was SO GROSS AND DISGUSTING that maybe he would start thinking I was gross and disgusting and would not think of me sexually any more. I love it when he still tells me I'm pretty or gently kisses me and makes me feel like the girl he first fell in love with, and not some old icky crippled person (which is how I can think of myself on bad days).

I often tell him I am so so grateful for his support; it's worth more to me than all the flowers, diamonds and chocolates in the world. I'm sure from reading your post that your girlfriend will feel the same about you, and I wish great happiness and health for both of you.

[J. Strange]

Wow, I'm surprised by all the response I've gotten! You've all given me a lot to go over, but I'm sure I'll have more questions. I'd like to address everything point for point, though it's gonna take a while.

[VickiB]

It's heartwarming to read your post, you obviously love this lady a lot. She's one lucky gal!

I was trying to sum up what makes my husband so wonderful, and I think maybe it comes down to the idea that it's not my bladder,...it's "our" bladder.
We didn't ask for this, but it's one of the cards I got dealt and it's up to the two of us to deal with it together. He shares my limitations regarding activities, diet, occasional needs to cancel something on short notice, and so on without the slightest bit of disappointment. I never am made to feel guilty. So many guys (and wives too I'm sure) seem to get resentful with their IC partner, like we're purposely trying to ruin their lives or something! My husband's acceptance of "our" IC is what makes it so, so much easier for me.

Bet there's ladies here wanting to know if you have a brother or two available!

Vicki

[mayray518]

Your girlfriend is one lucky girl. I was not so fortunate when I got diagnosed. The guy I was dating got out fast, the only thing he wanted to know was "Can I get it." There are a lot of documentation you can read that can give you info on how it feels. I know it hard to imagine when you cant feel the pain but the fact that you show interest tells me that you are a wonderful man.

[navemj]

I think it is so sweet that you posted so you could help your girlfriend. I told my boyfriend about this web site and he read about it. Most of all he always understands when I am in pain. He never complains that I have to go to the bathroom all the time or when I have to take all my medications. Most of all don't let your girlfriend ever give up. Just let her know that you will be there when she has a flare. Always make sure she eats right. I think just understanding is most important. I hope this info helps. She is lucky to have someone like you.
mary

[Esses]

one of the best tools I've learned to use with my fiancee is distraction. When she is in pain (virtually always) or feeling particularly down about her situation, I try to "entertain" her by engaging her in conversations about her favorite things. I talk to her about her friends and family, her hobbies, her pets, etc. Anything to take her mind off of the pain and aggravation she is feeling. Even if she resists, I persist! Eventually, she gets drawn in and before you know it, hours have passed without her focusing on IC. Patience and persistence are the keys. That and letting her know that you will be there for her and that her IC doesn't change how you feel about her. Good luck to you both!

[Sarojini]

You're a great guy! ;)

Have you read our patient handbook yet? It's located at http://www.ic-network.com/handbook and it is absolutely loaded with IC info -- it talks about diagnosis, treatments, and all kinds of self-help hints. If you take your time and read it piece by piece you will learn a lot, and you will learn lots of little tips and tricks to make your girlfriend's life easier :)

[Sarojini]

Oh, by the way, you can also read The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin. It is available on this site in the ICN Shop, or you can even get it through Amazon.com or maybe even at your local library. I believe it is one of the best books written on IC and can be very helpful in the beginning when you are just learning :)

[trytosmile]

I'm a little late getting in on this post but I have so much admiration for you and what you are doing to help your girlfriend through a difficult time and for wanting to know as much as you can about this illness to benefit yourself and her and your relationship. You are growing together is so many ways.

For the most part my better half is supportive but must admit he can get selfish and forgets my limits. Just last night, he was home from work late, I had his dinner ready. I finaly asked him at 9:30 why he hadn't eaten dinner, his response was I don't like eating alone, atleast you could have a bowl of strawberries with me. Hum, strawberries are a NO NO in my world AND eating that late doesn't help my stomach either, he knows this. Sometimes it hurts. I try as best I can to meet him in the middle it just feels at times he won't try and that only makes me feel like me and my illness mean nothing.

Anyway my point is she is so lucky to have somebody that wants to become knowledgeable in this illness. It's a tough one, everyday is like a new roller coaster ride, there are ups and there are downs.

message to the girlfriend..........He's a keeper !!!

[peet]

Hi,

I just wanted to say hi and introduce myself as a new member. My partner was diagnosed with IC about a month ago and we've been learning a lot about IC together. I am so glad that she has had this support group and she has had such great things to say about it that I thought that I should look into it as a form of support myself, especially with other spouses who so desperately want to help and support their loved ones.

It is so hard to see her in so much pain. I certainly feel as though I can support her and help with foods and finding bathrooms but I think that the pain part is the hardestespecially frustrating.

Anyway, I am glad to see other spouses/partners here and look forward to talking with more of you and other IC sufferers. Already it has been helpful to see the feedback from other IC'ers about what things they find helpful. Obviously the more I know, the more I can help.

Glad you all are here!
Peet

[sydney42]

Hi--I just wanted to add my welcome to J. Strange and to say that I think it's great that you are on here, wanting to support your girlfriend and learn more. My partner also just posted here (Peet--hi honey!) and is similarly trying to learn and help me as much as she can. I was thinking as I read people's responses that what's most helpful may be affected not just by our individual differences, but also by where we are in the diagnosis/treatment process. I was just diagnosed about a month ago, and have been talking/thinking about it all the time, and have been sooooooo grateful for my partner's patience and willingness just to listen to me, let me cry, be angry, etc., and just be there with me. I also appreciate her humor, her efforts to be creative with regard to what foods we can cook/eat together, and problem-solving re: upcoming challenges such as eating out or traveling to another city. Also (and again this may be more relevant for newly diagnosed IC'ers) her willingness to attend doctors' appointments with me. So, J. Strange, I hope those thoughts are helpful, and welcome to the board! Your girlfriend is lucky to have you.