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Hi All,

My boyfriend and I are really struggling lately and we ended up having a very serious "state of the union" conversation the other day in which he said that he feels our relationship has so many problems due to my IC.  From my eating to my fear/pain around sex, t it has just been really challenging for a long time.  He's right, of course, but it is so painful for me to feel like my relationship is going to end because of IC.

 

He does believe in this treatment, but he thinks that I don't take enough risks with my eating/drinking and that my issues with sex have more to do with other traumas than with IC (I disagree).  So, while he is not hostile to what I'm doing, I wouldn't really call him supportive, either.  I don't feel like he has an attitude of being in this together, and we'll get through it.  It's more an attitude of "hurry up and get better already so we can go have "fun" (whatever that means...)

 

I am feeling really sad about the state of things for us and am wondering if other people can chime in about whether or not what I described above is something we're sort of all experiencing or is it time for me to put my big girl pants on and let him go. I feel like I talk him into staying with me when these issues come up, and I'm sick of having to excuse who I am.  If my value is tied so completely to whether or not I'm able to go out to eat and have a roll in the hay, this really isn't going to work out long term anyway.  However, I know that he's human and has the right to express frustration, it's just all so messy and confusing! 

 

sjc89's picture
sjc89

Hi Claire!
 
My heart literally ached to read your post... I know the guilt/fear associated with the way this condition/treatment affects one's romantic life, and although my husband has not sat me down for any such "talk," I have often wondered if he feels "trapped" in our relationship (I was in what I now realize was simply a 2-year remission during our dating/engagement relationship, and then the symptoms came back in full force soon after we were married... I felt like I had somehow "tricked" him into marrying someone he thought was healthy and "normal" - even though I'd totally forgotten about my first bout of IC and never thought it would come back!).
 
I'm not even sure what to give for advice except to say that you seem to have a good overall viewpoint (the logical part):  your boyfriend is human and - like all of us - want to have as "normal" of a life as possible with our partners, BUT you are the one having to deal with this condition and (understandably!) don't want to sabotage all of your hard work by breaking too many rules while in treatment.  The trouble comes when there are hearts involved, because if you love someone, you will hurt if/when they hurt/leave you. I would say do not be afraid to tell him how much you want this to work and how much you care about him, but at the same time, do not change your protocol for his sake. Do not let him pressure you (even "unintentionally") into compromising where you're not comfortable, and do not sacrafice your own health (physical, emotional, or psycological) just to make him stay. Tell him you understand if he can't live with that, but that you just can't rush this treatment. NO ONE should have to live with IC or the fear of IC, and the thing we need most during treatment is encouragement, support, and love from those around us. Please take care of yourself and trust your gut. I know sometimes it's hard to hear, but you are strong just for going through this (sometimes I want to say, "but I don't WANT to have to be strong anymore!!"... lol), and I know you will make it through no matter what happens.
 
Hope this was even the least bit helpful... I just couldn't not respond because my heart goes out to anyone suffering with IC - let along suffering the effects it has on relationships!! hugs!!
 
Sarah 

cprince's picture
cprince

Gosh, Claire, I am absolutely feeling the same way and could have been me writing this post. I am so sorry you are dealing with this as well. My husband however, is not ok with my treatment and not supportive an anyway revolving my illness. It is so hard to have check this at the door as I enter work everyday and check it at the door when I get home. Very stressful, I do my screaming and crying in the shower or in my car as I drive to and from work. Like Sarah said, I almost feel like I tricked my husband into marrying someone that has been sick since childhood, I had dealt with many GI issues and such growing up but it wasn't until a month before our wedding when I really started getting terribly sick and continued to hide it for nearly another 3 years before I really thought death was knocking at the door, which is probably more true than I really care to imagine. 
It is so unfair we have to deal with being sick ontop of the stress that comes along with it as it truly affects every aspect of our lives and it's hard for others to understand the fear that comes with possibly trying something that pushes us over the edge whether it be food, exercise or sex. 
My husband tells me I am not trying hard enough. That I too need to try new foods or just eat what's available or need to be more physically active. I have a very physical job and by the time I get home I struggle to find the energy to do more and when I do it usually back fires and have to spend the rest of the night in a hot bath to soothe the inflammation.
It is difficult to know what to do when the love is still there, and you both still want each other in their lives, but just can't see past this part of the unknown when we will be better and back to a more normal life. 
 
Anyway, just rambling on I think, but I totally understand and have been wanting to post about it, but afraid I was the only one in this predicament. I hope you guys can work it out, but sometimes the stress doesn't seem worth it. 

fahlmank's picture
fahlmank

Good Morning, Claire, Sarah and CPrince;)
         This is a wonderful thread and highlights a topic where we really need one another's support. This condition encompasses an element of power that was initially difficult for me to fully understand when I first became ill at 19. So....  14 years ago...wow. What I mourn the most from my pre-IC self is that center of peace that comes along with blissful ignorance that things can't really go "that awry" ....I have control over my world...right? On the other hand, I have gained much more from learning to thrive with this condition than I have lost. That is not to say I would freely choose this lesson if given the choice, but since this is what is it, I have made peace with it and find healing happens when I accept it and find positive aspects of the experience. The power element is what I believe could make a relationship difficult because in order to heal... Really heal....one has to honor their body as a temple regardless of what the other person wants or needs- This includes intimacy, emotional drain or any other tug on our energy.
     Maybe my thoughts come from dealing with this condition awhile or feeling incredibly empowered after a divorce from my first husband, but if there is love- shouldn't he represent a place of healing and unconditional support? I think you are all amazing and shouldn't settle for anything less. Marriage and relationships are difficult and there should be compromise, but in our treatment, the compromise is not really mine to make- this is what is and it is no ones fault. My intention is for this to have been supportive to you- it is not easy to choose an unconventional treatment and stand by it. 

Mimij67's picture
Mimij67

Wow I was going to post but Katie put it so well, I barely have anything left to say. You deserve the best. I am already married and my spouse is not perfect but he still sticks by me. If he decides not to, I have to live my life anyway. I spent too much of my young life worried if someone would love me. I am truly worthy of love, and also, I love myself fully and do not need a man for this (now, the financial entanglements are another story, but even that can be overcome). I hope I ride this out with my partner. Dr. B has once said that she wished people could see it through, because it really does get so much better. But there is no convincing people of that while they are going through it. Tough choices. I trust you will make the best one for you. 
A side note, is he healthy in your opinion, that is healthy enough in body and mind? is there some aspect of his health that could be putting your healing at risk? My husband is not that healthy. We will probably have to use protection the rest of our lives.

If we don't excel at health, the only other option is disease.

cprince's picture
cprince

Hi Katie! Ugh, I had just wrote this lomg emotional post and it vanished! I will try to keep this post short and sweet! How do you find strength to move on from a marriage and relationship? It has been made clear that my relationship must come to an end if I expect to heal! I am not saying he is a bad person, but toxic to my healing and I have asked several times if I am in my right mind or able to make a sound decision and Dr. M assures me right now there is really no option. I am not handeling life changes well, and pain is through the roof and emotionally all over the place. Just needing some support and encouragement in knowing life will be ok on my own! Any words of wisdom would be greatly appreciated! Dr. M says it doesn't mean we can't eventually work out our differences in the future, but right now I need to learn to truly love myself and find peace and balance for my own well being! Struggling to find strength right now.

deir's picture
deir

My dear- you will be ok. This has to be one of the most difficult times you ahve ever had to go through but you will come out the other side. You know deep inyour heart that this is the right decision for today and you have not made it rashly or flippantly so try to have faith that you are on the right path. Just take one day at a time and trust yourself that you need to make this choice. The outcome is out of your hands but the action isn't and that is all you can control. ((((hug))))

cprince's picture
cprince

Thanks Deir! I can't stop my anxiety, but you are right this hasn't been so,etching that just came out of the blue and everyone is nudging me that much harder to get it over with, but doesn't make me feel any better about it. Ugh, I am hating life right now! :(

deir's picture
deir

I am so sorry you are struggling right now. Of course you're hating life right now- is there a way to just accept even that much? "I am miserable right now and anxious and it stinks" I always find that once I just accept even the worst thing- just for now- it is a little easier to get through and all you have to do is get through 1 24 hour period at a time or even 1 hour at a time. I am here if you need me.

cathy's picture
cathy

I know leaving a relationship can be very hard, I left my ex when my kids wer very young, they were 3, 5, and 7. I knew it would be hard and it took me 2 years to pluck up the courage. I had to do it for my sanity, it was the best thing I did. It is not easy but mentally I felt so much better after getting it done, there was so much relief to finally have it over with. You need to take care of you so you can get better.

cprince's picture
cprince

Cathy, thank you for sharing your experience, the helps tremendously! It still isn't going to be easy, but I know it needs to be done for my healths sake! I have hid my pain and frustrations about my relationship too long and it's time for me to "pluck up the courage," just as you said and do it! Just so tired of being sick and emotional over this, I need and want to put this behind me! 

megan's picture
megan

Claire, I can relate completely to what you are feeling and experiencing. My boyfriend and I are also at a point where we are deciding whether or not to stay together, and while it's not entirely due to my having IC, that is a huge part of it. The lack of intimacy, the lack of options when going out, the days when I've been in too much pain to get out of bed .. its just all caught up to us and it feels like nothing is fun or easy in the relatonship anymore. It's a tough situation - we expect our partners to be completely supportive and stand by us no matter what (and we do deserve that!) but I've often thought to myself, if the roles were reveresed I probably would not have stuck around for him. I love him, but I know I'd have to love someone very, very deeply to stick around through what I've been through. I think a part of me has held onto my relationship because, like you say, it's so hard to deal with any more loss due to this illness and such a sad thing to admit that a relationship has ended because of it. I also find it hard to determine how much of my feelings toward the relationship are due to my illness versus the relationship itself. For example, I don't feel IN love anymore, and I don't know how much of that is due to the lack of intimacy and not being able to go out and do fun things together and how much is to do with him. Honestly, I think the lack of sex has been harder for me than it has for him ... I don't know how to feel connected to him anymore. That said, I think if there's a really strong emotional connection in a relationship, that feeling of connectedness should still be able to be there. Ugh I'm rambling. Just wanted to tell you you're not alone and I understand how difficult this is. You have to do what you believe is best for yourself, and if you are feeling a lot of added pressure from him to get well and do more or stress that he doesn't really want to be there, then maybe taking some time apart is best. I don't believe things ever have to be final ... it doesn't mean you two couldn't get back together later on when things are a bit easier.

deir's picture
deir

Well, IC is TOUGH as is any major stress and life is unfortunately full of them. Before IC, my husband I dealt with infertility and also a period where I was injured and could not work or pursue any of my normal hobbies and those times were really tough but nothing compares to IC. Katie- that bliss you talk about is truly gone forever and yet, it was bound to go for some reason just not as dramatically as with IC. I know exactly what you mean!!
 
I have a great, strong 24 year long relationship here and we have struggled with this too. BUt I will say that although it is hard, I feel that I could never do this without him. I would never tell someone to end a relationship and I feel so much for those of you struggling with this because the truth is it would be better if the IC was gone but that is only one stressor in a life of stress. I don't want to sound morbib but life keeps getting harder in many ways. People die, finances get tight, Having children is a HUGE stress while it is also a joy, it puts a lot of pressure on the couple. I could never get through these times without my husband. We have had bad, sad arguments mostly due to my extreme grief but I always feel like "Thank God I have him" I don't know how I could function without him rooting for me. 
 
Those of us whose sex lives have been impacted by IC should not underestimate how tough that is. In a serious adult relationship, sex is more than fun and its loss is really hard. I am doing better with sex and I am so glad because i honestly felt like I had lost a HUGE part of my identity. I've been having sex with this man for 23 years (don't tell my mom!LOL) It doesn't just go away like "Oh well That was fun while it lasted"  My husband never said a word about it  (other than he worries I will get worse )and it will be his fault and still always leaves me notes like "have a good day ,sexy legs" and that helps me to feel like I exist as more than a survivor. It is me who suffers more with this because i just want what I want darn it! 
 
I have needed to allow myself and my husband to grieve and deal with stress in our own way and that is tough. This is going to sound crazy but the book "Men are from Mars, Women are from Venus" is embarrasingly right in many ways and John Gray has another book about how we handle stress differently that has really helped me. Some of it makes me cringe and yet i think he is spot on. That being said, Rob and I had a huge argument last night. Life is tough when you don't feel well but I know my life is less tough together with my husband, don't know if i'd stick it out if he made things even harder.
 
Love, prayers, peace, healing and strength to all of you. You are strong, amazing, brave, disciplined women
ps- sorry for saying tough so many times- i am in a rush!!!
 
 
 

Juliesummerstar's picture
Juliesummerstar

Claire I hear your struggle. I met my boyfriend two months before IC hit. We have been together almost two years. I have to tell you the things that have been tough have been SEX and FOOD/DRINK. Sex for him, like it does for many men, feels connective. Men tend to connect through sex. So he has felt deprived of connection. I watch him eating ice cream and drinking cappucino and I feel deprived of pleasure. So there has had to be a willingness on both sides to take a look at whether we are making the other person responsible for that feeling. We have a lot of TALKS. Long talks. We have therapists and support groups.
I think one of the biggest lessons for me has been listening to myself. In order to learn how to do this, I have had to say no to requests from friends and family. I have had to put myself first, which has not previously been my pattern. I think if my partner could not deal with my process of having to learn to put myself first, as strange as some of that may look, I couldn't be his partner. The thing that is keeping us together is that he is willing to tolerate this bizarre process as long as I am willing to stay open, hear his feelings, let him have them-even the anger- and accept that he hurts too. We can only continue to come together from that place of acceptance of the MESSY. It truly does take unconditional love from both people- or at least it has taken that for us.
Much love to you, and healing, sister.

ejh's picture
ejh

ejh's picture
ejh

Claire's picture
Claire

Hi All,
Thank you so much for all your wise, heartfelt responses - I posted this over a week ago and you gave me such great food for thought. Things at home and work have been so nutso that I haven't gotten a chance to write anything back til now. 
 
I feel like I have so much to say to each person who took the time to write such thoughtful posts but not a moment to collect my thoughts right now due to depths of complete craziness going  - this whole relationship issue has kind of taken a back seat at the moment! 
 
So, thank you for helping me feel less alone in my struggle, and for your kind words of strength and support.   I'm sorry that I am not the only one going through this, but I feel like its a real lesson in self-worth as we figure out how to navigate these tricky situations. 
 
Katie, your insights into the loss of confidence and innocence (or however you said it) that came with coming down with IC is so, so true.  As you know, this started for me as a teen as wel and I believe so much of what I have to learn from it is how to really listen to myself and not try to fit into a paradigm that doesn't work for me.  I'm so happy to hear you're doing so well and are considering trying for a new baby!  Amazing!
 
Anyway, I am on 3 hours of sleep right now and am a little delirious, but I just wanted to let you all know how much your candor and support means to me. Thinking of all of you! xoxox
 
 
 

deir's picture
deir

I was just thinking about the "loss of innocence" idea. I think every person unless they are in complete denial goes through something at some time that causes that loss and in a way, it is a great opportunity for maturity and wisdom. I know i often look around and think so many people are floating around free from worry but even if they are, at some point, something -whether a death or other life changing event will come to them too. It isn't fair that some of us have experienced this loss so so early- you guys in your 2o's and younger! But I think I am going to continue trying to look towards the growth , compassion and maturity I am gaining amid the loss. This is off the relationship topic but maybe not. (((((hugs)))))) to all. Claire- hope you are ok, hon.

DLFox123's picture
DLFox123

Hi Deir,
After your vacation trauma, I'm so happy you've found the inner strong you again.
Take Care and Hugs
 

Mimij67's picture
Mimij67

CP, I am so sorry it has come to this, but you WILL perservere. You will show yourself how strong you are. That you do not need love or approval from others. You are good enough for just who you are. This is so hard but you WILL come through it. I agree with Deirdre, don't fight the feelings, just be with them and they will pass. We are here for you.
xo
Mimi

If we don't excel at health, the only other option is disease.