How dialysis impacts relationships

[Poppylicious]

If anything, dialysis made our relationship stronger. We thought we were strong all along, and were actually quite ignorant when it came to kidney failure etc. Dialysis made me realise exactly how serious his condition was, and made me extremely scared to imagine life without him.

I would agree with this completely.  We hadn't been married long and life had thrown us so much crap that the kidney failure was just the icing on the cake.  But I know that because we can get through this - and still make each other happy - we can get through anything.  I'm sure though, that for everybody like you and me, there's another who really can't cope with a chronic illness and just bails out (whether romantically or platonically involved.) 

I'd like to think that if I was the one with ESRD, Blokey would stay with me; hopefully we'll never have to find out *touch wood*! 

"Rachel it is okay for you to be sick b/c you are a woman and a man will take care of you. That is acceptable in our society. It is another thing to be a man and to be sick. Women want to know that they will be taken care of and the man will provide for them."

That's terribly sad that your brother thinks like that ... I hope he finds a wonderful woman one day.  As for being provided for - I can't fault Blokey in that regard.  He is the perfect provider and is always taking care of me (perhaps more-so because of the ESRD.)

 

[cariad]

My husband falls outside that stereotype, happily. He knew about my transplant early in the relationship, but I don't think he really understood what could be and ultimately was in store for him. However, I did not really know myself and had never really taken kidney failure seriously. When the time came, he did everything for me that I needed. I often secretly worried that if our roles were ever reversed, I would not be up to it. I hope it doesn't happen, and I hope I'm wrong if it does.

Gwyn does like to fix problems, but that's OK, because I like to have them fixed. I've never understood the line that "men want to fix everything, women just want to be understood". To hell with that bollocks, if you can solve my problems, speak up! I like sharing ideas and trying to come up with a solution - I would be lost without a plan. People who just want to complain and do not want their problems solved get nowhere with me. I just don't get it when individuals seem to want to hear "You're right, that's an insurmountable problem. I pity you."

When I read jbeany's story to Gwyn, he shook his head. He does not relate to men like that.

[MooseMom]

I've thought for a long time what jbeany posted, that it seems that on IHD, the caregivers who post seem to be mostly women.  I can think of one IHD member (Zog) who is caregiver to his wife on D.  But then I thought that this data may be skewed because I have a feeling that most men who may be caregivers may not the the kind to post on forums like this about their feelings.

[RichardMEL]

I've thought for a long time what jbeany posted, that it seems that on IHD, the caregivers who post seem to be mostly women.  I can think of one IHD member (Zog) who is caregiver to his wife on D.  But then I thought that this data may be skewed because I have a feeling that most men who may be caregivers may not the the kind to post on forums like this about their feelings.

I think you're absolutely right.

[jbeany]

I'll grant my perspective may be a bit skewed...but I have seen the same trend among my friends with other illnesses as well.  It is, of course, a generalization about the male approach to problems and why we so often seem to miscommunicate between genders.  But we generalize things because they are true more often than not....

It might also be a generational thing as well - I see it more with those my age or younger, and not always just the men leaving.   I had a friend who was misdiagnosed with a fast-moving cancer and given 6 months to live.  His then-fiancee informed him that she had no intention of wasting 6 months of her life when he was just going to die.  Welcome to the ME generation and all that!  (Good riddance to bad rubbish and thank heavens the test was a lab screw-up!) 

And yet my dad stuck out every last painful minute with my mom when she was dying.

[chook]

The day my husband asked my Dad could he marry me, and the answer was yes (of course), my Mum asked hubby did he know what he was taking on - that I was sick and would have health issues? I remember being mortified but am proud of my Mum now for bringing up the issue. At the time Dad was doing home haemo and Mum was his carer, so it's no wonder she asked the question.
My hubby is my rock. He loads up my PD machine each night as I really shouldn't lift the 6L bags of fluid. He empties everything of a morning for me, except for my porta potty - I do that myself. My sex drive is almost nonexistent and hubby remains undemanding but attentive and affectionate.
We live on the land and my biggest fear is that my health will eventually mean a lifestyle change for us. We are 400km from the nearest D unit. I think I would have so much guilt if that was to happen, and that maybe hubby would not be happy.
This is a good thread - it's great to talk about this kind of thing.

[MooseMom]

jbeany, I don't necessarily disagree with your perspective, but despite the fact that many generalizations do seem to have a kernel of truth to them, we should be cautious when indulging in them.

Interesting point about differences in generations.  Maybe some of our younger IHD members could comment on that as I am far too old!

[DomJDavis1985]

Well i have only been on it for a Month....it hasn't really affected my relationships too much..honestly i haven't told any of my friends and family members the extent of my disease..lucky/unlucky for me most of my friends and family don't know too much about Dialysis..my best friend's brother does Home Dialysis...but she lives here in North Carolina and he is in Pittsburgh and she doesn't really talk to him much to know the real deal about Dialysis...honestly i am still in Denial myself that i even am suffering from Kidney Disease..and have just been able to "type it out loud" lol in the last week or two (thanks to this site)

I do not want to upset any of my friends and family  and i really don't know how to sit down and explain the situation to them....i am thinking of going out with my two best friends this weekend, sitting them down, and really giving them information about my illness...but then again i don't want to scare them

the only way i can say KD has affected my relationships is that lately i have been a little distant from my friends..but this is also a result of me being kinda tired too as a result of just starting Dialysis..the last 4 or 5 times they asked me to go out i have had to politely decline or come up with an excuse as to why i can't go out.

[MooseMom]

Aw... @ Dom.  It's hard to know what to do...you don't want to scare away your friends, but you shouldn't isolate yourself, either.

I don't know your friends, so this may be stupid advice, but do consider telling them.  If they find it frightening, well, so what?  It's not like you're contagious.  It's not like you expect them to DO anything.  Give them an opportunity to give you some support.  It's not that hard to have a kind word for someone who is suffering.  Hiding your feelings about something this life changing is hard work, and you shouldn't have to burden yourself with more hard work because dialysis IS your hard work for now.

If you do tell them, let them know that you are new to this, too, and are still getting used to it all.  They probably won't know what to say or how to react, but that's OK.  They have to get used to your new reality.  As for how to tell them, just give them the fundamental facts, that your kidneys have failed and that dialysis does just a bit of what native kidneys do.  Explain that you are often tired and that you don't always feel like having wild nights out on the town.  You might mention that you have to follow a certain diet and have to restrict your fluid intake (this might be useful for them to know because most of the time when people meet up and go out, eating and drinking are involved).

Be straightforward with your information, keep it simple, and if you feel like it, explain that this is a bit scary and shocking.  It's not a crime to allow people to see how you feel.  If they care about you, and given some time to take it all in, they will be understanding and supportive.  Friends will help you keep a normal life.  There is no need to suffer in silence when you have friends that can remind you that there is life outside of the clinic.

[DomJDavis1985]

yes knowing my friends they definitely will treat this with an openmind and i don't think it will scare them..if anything i think they may become over protective or motherly..especially one of my friends who is already like an overbearing older sister (but in a good way  ) lol....the main thing is i don't want people treating me differently ....i already have a boss at my job who usually treats everyone(including me before my illness) like crap...however ever since i told her about my illness she has been really nice to me(almost too nice, sicking-ly nice) i mean i appreciate the thought..but honestly i just wish she would yell at me once...so it would feel more realistic, lol 

[MooseMom]

They may treat you differently at first, but as time goes by, they'll largely forget and will go back to treating you "normally".   But if they are a bit more "gentle" with you, well, there's nothing wrong with that.  We should probably all treat each other a bit more kindly, no matter our health status.

[romanyscarlett]

Personally, I find the change in relationships to be the hardest thing to deal with.

I've just turned 26 but I may as well be 126. I used to work for 2 major record labels and I'd travel the country going to different gigs, the concept of a weekend at home was unknown to me and going to bed before 2am was also completely alien. Even when I quit that job and stuck to my office job, I'd still travel every weekend and meet up with friends during the week for dinner and drinks.

I don't see any of my friends any more. They don't know how to act around me and I don't know how to act around them. I don't have anything interesting to talk to them about. They will talk about their latest holiday, what's happening at work, a gig they went to etc whereas all I have to talk about is needles, machines and illness - hardly a thrilling topic of conversation. They expect me to be the energetic, happy girl I used to be but that's just impossible. I know things will be different in the future but that's not much help now. I keep in touch with people via text, email, twitter and facebook but that's because it's easy for me to put on a mask of bravado and not tell them depressing tales of dialysis and dying. I can't keep up with them anymore anyway. I've tried joining people for dinner but the dietary restrictions end up drawing attention back to the illness - besides which, I'm so tired each day I end up spending the evening yawning and that's just rude.

My boyfriend and I have given up making plans. I've lost count of the amount of times we've had to cancel things at the last minute because I'm not feeling up to it. I feel incredibly guilty about this and it makes things worse. I'm lucky that Rich is so easy going, he doesn't mind staying in and watching a blu-ray rather than going to the cinema. I still can't help but feel he'd be better off without me though. He's 26 too and should be out enjoying his youth, not stuck indoors with his sick girlfriend.

[MooseMom]

Romany, I don't know what to say to that.  It's just all so unfair.  It must feel like everyone else gets to live their life but you don't, that they are just going on without you.  And frankly, that does seem to be what is happening.

I don't know what you can do to change that.  I would like to say that perhaps you could arrange to have an early dinner out with just one or two of your friends and keep it sorta low key so as not to tax your energy.  Or have a friend or two over for a movie night.  I would like to think that one or two of your friends could understand that just because you do not have the energy you used to have doesn't mean you are doomed to be a hermit.  But at your age, I don't know how many people could be that empathetic.  I would like to think that one or two of your friends could amend their expectations of you to something that you can more realistically live up to.  Are you absolutely sure that they "expect" you to be your old self under these trying circumstances?  Are you absolutely sure that their expectations can't/won't change?

We'd all like our old lives back.  Some of us may be able to achieve just exactly that.  Others of us will be able to find simple pleasures in our new lives.

One thing I have learned...people usually do what they want to do.  If your boyfriend didn't want to be with you, he'd find a reason not to be.  I doubt you are forcing him to stay with you. 

 

[WishIKnew]

I said earlier that I lost most of my frineds, but what I did not say is that I have found some new friends and they are a huge blessing to me!!!!!  Maybe that's life regardless of health.  We change and grow.  Some frinedships last, others don't and some relationships happen because of the new changes...  Just trying to  put a more positive spin on my earlier post.

And - I will say that some of the people who  I used to spend a great deal of time with I have left out of my now because they were takers.  When I was healthier I had time and energy for takers but now I don't.  I don't spend time with anyone who pulls me down.  My choice.  When you have limited energy you get pickier about who you give it to.  At least I did!  And I don't regret it!

[Kitty Cat]

It's been a double edged sword. I am the caregiver, my husband has now been sick for 12 yrs or so.

His friends ran away when all of this started. It was heartbreaking for me to see him calling a long time friend and never get a call back. We then took the stance that we should be grateful that they left. The new friends he has made while he's been sick are people we're closer to than family. Sadly, we can't depend on family for anything at all. Trust me when I say, it's better that way.

The good part is that this has brought us closer together. Don't get me wrong, I hate, hate what this disease has done to him and our relationship, but I still have him. We have learned to appreciate the small things in life that we'd never noticed before and we're more vocal about saying I love you or thank you. The two huge phrases.

There's a lot of arguing especially on dialysis days, he gets highly agitated and I think the fact that he depends on dialysis to keep him alive irritates him terribly and because I'm closest.... I tend to be quiet on those days but if I had to rate it overall, I'm beyond happy that he's still here with all of his problems. I don't know how he does it with everything that's happened and keeps on going!

[RichardMEL]

And - I will say that some of the people who  I used to spend a great deal of time with I have left out of my now because they were takers.  When I was healthier I had time and energy for takers but now I don't.  I don't spend time with anyone who pulls me down.  My choice.  When you have limited energy you get pickier about who you give it to.  At least I did!  And I don't regret it!

very good point. I think a key theme here is that those "friends" we lose when we have a chronic disease aren't really friends in the true sense - they're the "good time" friends (or fair weather if you like) and/or takers. When you can't give as much because of your own circumstances, they'll go leach off someone else. Good riddance I say. You can certainly soon tell who your real, dear friends are - they're the ones who are still there, who you KNOW actually give a damn and want to support you - even if they can't actually do much.

In a way it can also be a blessing in disguise in terms of our disease. Weeding out "friends" is something that is in the longer run probably very good for our emotional health. Yes, it hurts n the short-medium term, but down the track it is probably worth it and the bonds you forge with new friends will likely be stronger and more genuine.

Those that can look past the disease and stuff and see see the wonderful person there are the sorts of friends you want in your life.

[romanyscarlett]

Romany, I don't know what to say to that.  It's just all so unfair.  It must feel like everyone else gets to live their life but you don't, that they are just going on without you.  And frankly, that does seem to be what is happening.

I don't know what you can do to change that.  I would like to say that perhaps you could arrange to have an early dinner out with just one or two of your friends and keep it sorta low key so as not to tax your energy.  Or have a friend or two over for a movie night.  I would like to think that one or two of your friends could understand that just because you do not have the energy you used to have doesn't mean you are doomed to be a hermit.  But at your age, I don't know how many people could be that empathetic.  I would like to think that one or two of your friends could amend their expectations of you to something that you can more realistically live up to.  Are you absolutely sure that they "expect" you to be your old self under these trying circumstances?  Are you absolutely sure that their expectations can't/won't change?

We'd all like our old lives back.  Some of us may be able to achieve just exactly that.  Others of us will be able to find simple pleasures in our new lives.

One thing I have learned...people usually do what they want to do.  If your boyfriend didn't want to be with you, he'd find a reason not to be.  I doubt you are forcing him to stay with you. 

 

I'm such a different person now than I used to be. It's not so much them expecting me to be the same, it's more that they can't believe how much I've changed. I've gone from being vibrant, energetic and adventurous to being tired, moody and reclusive.

I've put on about 30lbs of weight which is partly down to my diet (I pretty much live on bread) and partly down to me now living a fairly static life. I never have the energy to exercise, even walking around the supermarket wears me out. I'm so pale that none of my make-up matches my skin tone anymore and my hair is falling out. I don't want people to see me like this which is another reason why I don't see my friends. I went to visit my best friend a couple of weeks ago and she was shocked at my appearance.

I don't feel like a valid human being anymore. I don't have anything to contribute to society other than draining the NHS of resources. I used to have a fantastic job, lovely home and a ridiculous amount of disposable income. Now I'm unemployed, living with my mother to save on rent and I rely on my boyfriend for money. It's a complete u-turn and I feel that people won't want to spend time with me because I have nothing to offer them. I know that's not how my friends feel but the idea won't leave my head.

I hate to sound like I'm living in a world of self pity, that's really not the case. The staff at dialysis are always commenting on how cheerful I am (even if it is usually just bravado) and I'm always hearing "I can't believe how well you cope with things, I'd be a mess if it were me". I have an lovely boyfriend, my mother is giving me a kidney, I have the most gorgeous miniature Dachshund and I've discovered that I'm an exceptionally good cake baker. I guess I just find it hard to interact with other people at the moment.

[kristina]

I am so sorry, romanyscarlett,

I do hope you feel better soon.

Best wishes from Kristina. 

[Relentless]

Romanyscarlett, I really hope when you get tht kidney from your mom that you don't let it go to waste and don't forsake it.  I know whn I get transplanted tht I will be living my life like it was my last day not just for me but for everyone here that went and goes through the same pain I go through.  I truly beleve that you will get to tht happy part of life tht you were once at.

[MooseMom]

I don't feel like a valid human being anymore. I don't have anything to contribute to society other than draining the NHS of resources.... I have nothing to offer them. I know that's not how my friends feel but the idea won't leave my head.

I hate to sound like I'm living in a world of self pity, that's really not the case. The staff at dialysis are always commenting on how cheerful I am (even if it is usually just bravado) and I'm always hearing "I can't believe how well you cope with things, I'd be a mess if it were me". I have an lovely boyfriend, my mother is giving me a kidney, I have the most gorgeous miniature Dachshund and I've discovered that I'm an exceptionally good cake baker. I guess I just find it hard to interact with other people at the moment.

I know this may seem like a small thing, but every time you post on IHD, you've offered something.  The very fact that you've posted this simple comment has made someone realize, "Someone else feels just like me!", and that can be incredibly uplifting.  This forum gives us all the opportunity every single day to tell people that it is OK to feel like this and that there is no shame in feeling emotional pain.

I really despise the whole, "I can't believe how well you are coping...I know I couldn't do it."  It's BS.  It stems from this unfounded belief that God/the creator/Fate/whatever gives you only as much as you can take, and since I couldn't possibly take it, it won't happen to me.  And then we put sick people on a pedestal and declare how "brave" and "strong" they are when it is all bs and we're just as scared as anyone else would be if they were in our shoes.  People who say such things don't see you at 4AM when you're lying awake, wondering what the hell happened to get you to this place, to this time.  Perhaps the next time someone says that to you, you could sneeringly say, "No, I expect you couldn't..."  I've never said that and don't really recommend it, but boy, have I been tempted!

If you don't feel like interacting with people right now, then don't unless you really have to.  Don't add burdens to yourself.  You have enough on your plate already.  For right now, just do what you have to do to carve out some pleasure in your life.  Spend your time baking renally friendly goodies with your bf, keep yourself healthy so that you can enjoy the kidney your mother will give you (and do take a moment to enjoy your great fortune.  So many of us do not have a live donor!), and when you are ready to get back out into the world, whether that is before your transplant or after, you will know it.  I am looking forward to hearing from you when that day comes.  In the meantime, IHD is a good place to be!

[rsudock]

what a wonderful place this is to be so supportive of one another and our feelings....I LOVE IHD!!!

I think dialysis takes a bit to get use to mentally and physically...after 8 months and quitting a job, I feel like now I am coming back to my old self. Yeah do I hate dialysis still? OF COURSE, but I am able to mentally come to terms with it. I think many of us get washed over with the overwhelming feelings and guilt associated with dialysis. We are swimming in a pool worrying about our friends seeing us different, our lovers not be fulfilled, low self-esteem, and not having the energy to work and process all that is going on....it is no wonder that people have a hard time getting over the mental exhaustion that goes along with this disease.

Everyday we must pick ourselves up and keep treading this pool. You begin to realize which friendships and family members are in it for the long haul....keep those people close to your heart. Cherish them.

xo,
R