being in a relationship while being ill

[vanessa]

Hello I just was wondering if anyone maybe has been going through some of the same situations I am currently going through.? I have been with the same person for 12 years and in 2005 i was told I have p.k.d. since then things have been ok up intill around 3 months ago when the kidneys started to fail rapidly. I have had a pic several trips to the er been placed on the transplant list and am now about to be placed on  pd I love the person I am with however i have noticed the anger towards me coming out more and more only in words but things are being said like" dont move that stand , i dont want to hear you wine about how your kidneys hurt " i have also heard  wouldnt be here but who leaves a sick person "I really love this person but who says that to someone ? I will be honest and say our sex life has sorta been pushed to the wayside a little in the past few months and that i am not one to whine i deal very well with being ill at times yeah i do hurt but i am much stronger then the normal person as i try to hold it in even my dr is like do you need something for pain and i take tylonal however these words are killing me they have shut me down and made me question my whole relationship what do i do from here ? have any of you had this happen i know it is really personal and i am problably dumb to talk about it i just need to talk to someone thanks for listening

[monrein]

It is not at all uncommon (unfortunately) for relationships to suffer and even to end as a result of any chronic illness and I'm sure that many many people can relate to what you describe.  Especially if the people in question are younger, a partner can feel as though they have been shortchanged and they DO have the option of leaving (although they may feel huge guilt) while we of course are totally stuck with our lousy kidney disease.  I often think that it is harder in many ways for the "normal" person because if they've never been sick they really can only imagine what it's like and even if people love each other, illness, loss, financial problems and other stressors can erode those feelings faster than an ice cube in a warm shower.

What you can do is try to keep talking about the relationship and about your feelings but remember to ask about how your partner is feeling too.  Encourage honesty and try to truly understand how they might be feeling (this will not be easy and you might feel anger yourself as these feelings might appear selfish).  I will be perfectly honest here myself and say that I truly don't know if I could have stuck it out if I had not been the one with ESRD...we all only have one life and not every person, including myself, is as "good" a person as we ought perhaps to be.

As for the sex life part, it's normal for that to grow distant when there are other stresses in the way but again it's important to talk about this area of your lives.  I think it's also important to try to meet the sexual needs of a partner as much as possible in order to maintain intimacy and closeness.  Your sex life will certainly be different if you have lost interest but it's important to consider your partner's continuing needs and find new ways to remain sexual.  Intercourse is not the only game in town and pleasuring your partner can take many forms.  You might also consider seeking some counseling to help you both discuss the huge changes that illness has introduced into your lives.

[silverhead]

As I read your post, I was trying to formulate a response that might make sense, then I read Monrien's reply and felt that was far more insightful than anything I could say.....

[MooseMom]

As I read your post, I was trying to formulate a response that might make sense, then I read Monrien's reply and felt that was far more insightful than anything I could say.....

Same here!  I would have just yelled about your partner being full of ****, but I don't think that would have been helpful.

Far from being dumb in talking about this, it's probably the smartest thing you could have done.  Putting your feelings down on ether-paper helps you to really examine what's going on.  I will be very interested to hear if, as a result of some of the things your partner has said to you, your level of trust in this person will decrease.  If you perceive yourself to be "stronger" than this person, and if that is becoming more apparent as your medical situation changes, for how long will you respect your partner?

Forgive me for asking this, and you certainly are under no obligation to reply, but has your partner offered to be tested to see if donation is possible?  (My apologies if you have answered this on a previous post.)

[jbeany]

The "in sickness and in health" stuff is a lot easier to promise than it is to live up to.  I knew my husband wasn't going to be able to handle it when I suffered nerve damage during my first fistula surgery.  I was in so much pain I could barely stand to be touched, and his response as I sat in bed shaking from pain was "I don't know what you want."  I wanted him to be there, just be there, but knew then it wasn't going to happen.  I tried not ask much of anything from him if I could help it from then on, knowing it wasn't there for him to give.

Of course, when he finally got over the guilt of leaving his wife while she was on life support, he told me he felt like I didn't need him enough.  Can't win for losing, huh?

Have you talked to him about counseling?  Would he even consider it?  Would he consider coming on here to talk to the other care-givers?

 

[gothiclovemonkey]

Im sorry to hear that, and i have had a somewhat similar situation.. Only my relationship was not ever remotely long with the person. we were only together for about 2 years, and only a few months of that was i really unwell.
In my situation, he wanted to be with me, but he told me he doesnt want to be responsible for another human, he wouldnt marry a sick person, and he doesnt want kids (i have a child, and was having multiple surgeries when he informed me of this... BUT said he didnt want to break up, still wanted things to be how there were) Call me crazy but I dumped him. I would like a partner who wants to hold my hand when im down, help lift me back up, just as i would do the same for them. "Through sickness and in health"
I hope things get better for you 

[vanessa]

thank all of you so much ! no testing has not been done and i don't think it would even be considered . I feel like screaming just go I am very able to care for myself i realize at times a needy side of me comes out however it is only because they have lead me to believe it was safe. I have listened closely to all of your advice and I have to say yes I do feel resentful towards my partner not because I'm sick and they are not but because i feel as if I was betrayed . i don't want to hear how guilty you would feel for leaving a sick person . I want to hear we will get through this ! well thank all of you so much  and i will try to listen and be more patient !

[gothiclovemonkey]

Good luck hun 

[Poppylicious]

Vanessa, I'm so sorry that your relationship is taking the strain of this.  I'm coming from this as 'the normal partner'; my Blokey is the one on haemoD. 

Have you talked to him (sorry, I assume it's a him!) about how HE feels?  I don't just mean in passing, but have you sat down and just talked about HIM. For those of us who live with someone who has a chronic illness it can be so incredibly scary.  You find yourself constantly worrying about them.  I'll be honest, I have been completely and utterly rotten to Blokey on occasions, but that's not because I hate him, or want to leave him.  It's because I've been so scared and nervous and frustrated and angry and ... well, a little bit of everything really.  I have said some awful things and I wish I could turn back time and take them back, but I can't.

You say that this has only been a real issue for the last few months, since your kidneys started failing rapidly?  Until now your disease has been in the background and suddenly it's not just your life which has been turned upside-down and inside-out but his too, and the lives of your children.  Your immediate present and immediate future has been thrown into turmoil and emotions from both of you are going to be running all over the place.  Having the time to get used to a disease doesn't mean that it's any easier when you have to begin dialysis (and live with it in your own home.)

When Blokey was first on haemoD I used to get incredibly irked by folk who constantly asked me how he was but never asked me how I was.  It's very easy for people to focus on the person with the disease and forget the strain which is placed on 'the normal partner'.  I'm not so fussed now, but it made me angry for a long time. 

I suppose what I'm trying to say is that perhaps he needs to sit down with someone and talk, whether it's with you, or a family member or close friend, or with a counsellor/therapist.  I think in a previous post you mentioned that there's a 50% chance your children could get the same thing; no doubt this must play on his mind quite a lot too.  I would also imagine that he's very scared of losing you.  I am very scared of losing Blokey; it's my one constant and nagging fear.  Fear makes us say the most horrible things to the people who least deserve it.  If he can find some other way to vent his fear/frustrations (I keep a blog, for example, or whine to my mum) it may help.

I really hope you can find some way of sorting this out.

*huggles*

[MooseMom]

May I ask why donation wouldn't even be considered?  While it is absolutely true that your partner is under absolutely no obligation to be tested and has every right to hang on to his/her kidneys, I often wonder if, in a committed relationship, no offer to at least talk about/consider being tested is psychologically undermining.  That may not be fair, but I find it very hard to believe that someone who needs a new kidney would remain emotionally unscathed if their committed partner wouldn't even consider donation (in the absense of any medical problems of their own, of course).  It may not be fair to quantify love and commitment in this way, but nothing about ESRD is fair.

I would have hoped that being with someone for 12 years and sharing the upbringing of two kids would make it easier for your partner to talk about what s/he is feeling.  Poppy has a point that fear can make you say hurtful things.  I have not been the easiest person to live with from time to time, but I take pains to explain to my husband that I am struggling with fear and resentment, so we are both well aware of the tectonic emotions that are at play.  I also am careful to explain my concerns about how my illness will affect him and our future together.  We don't have any answers yet, but at least we know how each other feels, and why.

What you said about why you feel betrayed is key to all of this, and your very insightful comment is spot on.  You feel betrayed because you believed that it was "safe" to be ill around your partner, but now your partner is letting you know in a passive aggressive way that no, it is not ok for you to be ill.  This is betrayal of the worst sort in my book.  It is OK for your partner to feel fear or anger or resentment at the world at large, but for your partner to destroy the safe haven you thought you had is soul-destroying.

Unfortunately, it is entirely possible that your partner just isn't strong enough, and you will have to decide what you will do with that fact.  If you can, perhaps you can discover what it is s/he is actually feeling.  Do you think s/he would be honest with you and tell you what it is s/he now wants or expects from your relationship and the turn it has taken?  Dialysis is tough, and transplantation is tough, and if you cannot trust this person to have your back, you either have to end the relationship or else decide just how little support you are willing to take. 

The other thing you will have to consider is how much this person is going to need from you.  Ideally, you would both buoy each other up as you need to, but if you are doing all of the emotional and psychological support work, you will need to think about how much energy you will allocate to that.  If you love this person and are willing to do most of the emotional support because s/he cannot quite yet come to terms with what has happened, then that's fine. 

Poppy, I have an acquaintance who has a wife with MS, and it is getting progressively worse.  She is going to have to give up work soon (no one at work even knows she is unwell), plus she has two kids and is understandably scared to death about leaving them mom-less.  This acquaintance has said, like you, that sometimes he would get annoyed when people would ask how she was doing but not how HE was doing, but then it occurred to him that there was no way in hell that he would want to trade places with her, and his annoyance instantly dissipated and never returned.  This may be a good coping mechanism for you should you ever feel that annoyance.

[Phraxis]

There has been allot of research on your question. For example, http://www.cancernews.com/data/Article/739.asp which provides some context based on gender.

It may not be a popular view but I think it is easier to be seriously sick in a relationship than it is to be the supportive one, having done both. Ultimately, I believe illness is just another anvil upon which the strength of a relationship can be tested, and the important thing is to take a hard look and decide is it my "stuff" or theirs? And then ultimately you decide if you are willing to take on their stuff and give them the choice to take on your stuff or not. Should they choose "not" then you let yourself heal from the emotional wound secure in the knowledge that you did what could be done.

And if none of this makes sense, look to Monrein 'cuz she seems to have a good handle on the matter.

[rsudock]

Well I have been hinting around lately that Aaron and I are going through some stuff and since you are struggling I will share my story with you...

I was on dialysis this past 11 months and looking back I was a bit of a bear to deal with. My boyfriend (Aaron) is a great guy but I think people get to their breaking points. Even though he would sit with me at D, go to the ER, and hold me while I cried...I still wanted more! I mean why wasn't he making dinner after D every night? Other care givers do on IHD!!! Then when I mentioned home dialysis or ABO incompatible transplant I felt like he was giving me one excuse after another, when in hind sight he did have good points. But to the person on D I think sometimes we become consumed with this disease and forget about our partner. I mean for goodness sakes we are dying on this machine....our needs should be first, but in reality a partner's feelings must be taken into consideration.

Fast forward to transplant...OMG we were fighting a lot 2 weeks after transplant. It was like he had all this anger at me and now that I was better, he could let it out. I realize now that he was frustrated and felt like I didn't have his best interest at heart. HIm " You act like I didn't want to give you a kidney, but I did get tested. I have AB blood and I don't match." me-"Well what about ABO incompatiable transplant?" Him-"I am not going to give you a kidney that is just going to reject! You show me the research and set up the appointment with the doc and then we will consider it."  So you see to me he should have said , "Yes let's do this. It sounds great. I will call the doc." But in reality he doesn't know jack shit about ESRD. I am the one who suffers with it and he relies on me to help him navigate this world. To me I want him to take charge and the lead but that's not how it is....the major way he knows how to help me is finacially. I need to accept that...

The one thing we did was really talk/fight a LOT! Just said everything that needed to be said....it was ugly at times, but it did make me realize that he felt like he lost his best friend and was scared that I would be so depressed again....I just told him "You know I can't predict how I am going to be on D the second time around, but I will be less scared b/c I know what to expect and if you do home dialysis with me, that will help me feel more in charge and healthy."

Finally when he was trying to tell me "well I just need a month to figure out how I feel." I sat him down and said, "Aaron if this is really how you feel and you can't forgive me, we need to break up. I am not going to live in limbo worrying about this. I am healthy now and want to live and enjoy life. I am sorry that I was a having a rough time, but it was my first time on D. The next time I will know what to expect. It is easy to be with someone when everything is great, it is alot harder when things are bad. That is where your commitment comes into play. You either want this or you don't...."

Thankfully since then we have been fine...great actually. We aim to treat each other with respect, hear each others opinions, consider each other's feelings, and show each other acts of love everyday. Significant others need to feel safe, cherished, and loved. Once they start feeling unlove or unappreciated that is when things take a hit....

Ok one last thing I was reading a self help book about relationships and the one thing it talked about was how people in relationships shouldn't expect the other person to completely take care of their heart. That we should have a hand on our own heart to pull it away from our partner when they cannot take care of it for some reason. Kinda like be responsible for your own happiness and be considerate to your partner when they are having bad days and not being lovey dovey, it is okay b/c you don't look to your partner for everything and you don't have to hold resentment against them for those days that they drop the ball...

hope that helped somewhat...

xo,
R