I think I'm starting to understand the lonliness of ESRD

[Deanne]

I've never really felt lonely before. I don't live near family, but that's by choice, and I have great friends. I think I'm starting to get it now though. I think my friends are somewhat amused by my rage at Good Sam's insistance that I have someone attend my appointments with me, starting now. I don't think I can help them understand that it isn't just about having a body there with me. It's about the transplant center's attitude that my independence, my right to privacy, my opinions are no longer important. I'm just a body that is required to do their will. I didn't fully understand it until it happened to me, so I can't expect them to understand it when they're still able to enjoy health and independence.

It didn't help that someone I think of as one of my closest friends said she won't be available to help me get to my appointments post-transplant, but I can sign her up for the "night shift" if I need help. She won't be willing to take any time off work at all if I need help getting to an appointment? Really? I'm trying very hard to find ways of getting help that will cause minimal inconvenience to anyone. I work, too. I understand it's not always easy to get time off, but I don't think I'm asking for much, either. At most, I'm hoping my working friends will take one stinking morning off each if I can't find another way to get to appointments. Someone I think of as a close friend isn't willing to give up one morning for me? This isn't someone who's job would be on the line for it. She's a college dean who's well respected by the managment at her college, not someone with a poor work ethic who's been warned about taking too much personal time off. I think she would do it if push came to shove, but her statement still stung and I understand lonliness now.

[willowtreewren]

Deanne,
For me it was the friends who stopped asking if we could participate in evening activities. It would have been nice to be asked, because in a pinch we could have arranged our schedule, but the assumption that we weren't "interested" did hurt.

When it comes right down to it, others have a hard time understanding what our lives are like with ESRD because they just don't experience it.

 

Aleta

[peleroja]

I understand where you're coming from.  Even our nephrologists don't understand, cuz all they know is book learning.  They've never sat in the chair, or done PD or had a transplant and know the hell folks go through for 6 months post transplant.  I'm very grateful for my friend who, like me, has done PD, hemo, and is now a 6 year transplant.  She can walk me through anything.  I know it ain't the same, but we're here for ya!

[MooseMom]

Deanne, I beg to differ.  The issue isn't one of your loneliness, rather, it is one of their selfishness.

No one has to "understand" ESRD to offer to help out. 

As for the transplant center, these people know they have you by the puppet strings; their rationale is that if you don't want a transplant, then you don't have to do what they say.  Not every center is like that, though, but a lot of them put "protocol" first and "patient rights" second, mostly to protect themselves.

Really, the selfishness of people is astounding and vastly disappointing.  Your "friends" will someday be hit by the Karma Bus.

 

[RichardMEL]

I don't even understand this "requirement" to have someone there with you - what's that all about? I've gone to all my post-tx stuff alone, and any pre-transplant stuff(which was minimal) was also done by myself. I don't get that - but that's a whole other issue to this topic.

In terms of the folks not willing to give up their day jobs to help you out that's unfortunate but actually a bit understandable to me. Now before you think I'm taking sides or something - I'm not trying to - but I think I can understand in a way. Clearly if this friend is willing to go on the "night shift" to help out that means you're not totally being abandoned and she's trying to be there for you in her own way. Maybe she just feels she shouldn't be taking personal time to help a friend when she may well need that time for herself or family at some point? If she has a very busy job (Dean sounds busy!) maybe that's an issue too. Of course the counter to that is that if you're such close and dear friends she should be able to *make* the time, because your friendship should be more important than that. I can absolutely see that.

I think though that MM's point is very valid. It comes down to what's convenient for your friends, and the levels to which they are willing to go for you shows how much they value you in their lives. Sort of like putting a value on you/your friendship. That's hurtful, but it's also human nature.

For me when I think about the topic of "lonliness" in relation to ESRD I think more of the isolation caused by friends/family "dropping off" - either because they can't deal with the situation you're in, or don't want to, or even are a bit afraid(?!) to be invoved? As I recently related in another thread bizarrely enough I seem to have lost a few more "friends" *since* my transplant when if anything you'd think they'd be coming "back" more than anything. Go figure!

The isolation is also caused by a real lack of understanding - specially when *some* people might look at your average dialysis patient and think "oh they look so healthy. There's nothing really wrong with them" - which as we know is utterly bogus. These are the sort of people who would then think "oh they're just playing the sick card to get out of doing stuff" and when that kind of mindset occurs there's not a lot you can do.

One of the great things about our IHD community, in my view, is that we can help a little with this isolation. We may not understand everything you're going through, but a lot of us can relate to many aspects from our own situations and experiences - and we won't shun you for how you feel or what you're dealing with. 

[tyefly]

Deanne.....  I know you dont know me.... but I live in the Portland area.... and   I would be willing to help you in any way.. Its important to get listed and get that transplant.... I am self employed and I can re arrange my schedule to fit any need.....( I dont have to be anywhere most of the time..)    I hate the requirements that transplant centers do to all of us....    but  unfortunately we have to jump threw the hoops... the important part is to get listed.....     

[Jie]

Another problem for us ESRDers is that we don't have energy to do many things with friends anymore.  For me living with a family, loneliness is not too much an issue. We definitely have not dealt with friends as much as before.

For a patient living alone, it really needs a lot of helps from friends or family members during the first 3 weeks after transplant. It really should not need any partner for most pre-transplant and post-transplant appointments, but it does need help for care after transplant.   

[RichardMEL]

Another problem for us ESRDers is that we don't have energy to do many things with friends anymore.  For me living with a family, loneliness is not too much an issue. We definitely have not dealt with friends as much as before.

For a patient living alone, it really needs a lot of helps from friends or family members during the first 3 weeks after transplant. It really should not need any partner for most pre-transplant and post-transplant appointments, but it does need help for care after transplant.

good points too. And it becomes a kind of snowball effect - if you're not well enough or too tired to get involved in things, then people will shy away - eithe because they feel you can't do much anymore so don't bother to invite/involve you, or because they feel you don't *want* to do stuff - but either way it can really put strain on friendships and family attachments because this disease tends to isolate us because of the demands on our time and affects on our ability to do stuff due to lack of energy, feeling sick and/or general depression etc.

it can really suck!

[Sugarlump]

Life sucks. 

[gothiclovemonkey]

i had friends before ESRD... now i never see them, and rarely hear from them. Occationally i get a quick text or FB message from someone, but it tends to be rare...
Alot of them dont understand, one, in particular, has a relative who does fantastic on dialysis, so now she doesnt believe that i have the problems that I do. Another friend stopped talking to me when I stopped working, probably because I didnt have the money to support her anymoe....
People change, I have quite a few online friends because my offline friends completely abandoned me, and thats fine, because most of them didnt "get" that I cant drink, and most of the time dont really feel like fighting the bar crowds and dealing with drunk idiots.
Last two times I braved it, and went out, the first time i got SPIT on, my friend kept buying me drinks (10 shots of tequilla to be exact, plus a few mixed drinks) even after telling her many times i cant have that much fluid (her thought was its just shots..)
and then the next time, we were getting ready and informed me shed invited someone else, no biggie, but then proceeded to say "I know u dont like her, but we never have fun when its just me and u its boring" exact words.

needless to say, esrd sucks, and it takes things from us BUT at least we have IHD friends 

[RichardMEL]

Alot of them dont understand, one, in particular, has a relative who does fantastic on dialysis, so now she doesnt believe that i have the problems that I do. Another friend stopped talking to me when I stopped working, probably because I didnt have the money to support her anymoe....

re the first - yes that's really difficult when people don't understand that everyone is different - some do well on dialysis(I was a lucky one) and others do not (I saw enough in my time to know that even if I never was on IHD). Sadly when you're not interacting with other patients and just know of the one who is doing well those assumptions can be easy to make.

As for the second...well that's not a friend at all - that's a user!!! Good riddance I say. When it's all about what you can do for them rather than being a mutual support thing.. well that's wrong. I hate one sided friendships... because that's no friendship at all.

Just my two cents.

[rsudock]

Hang in there D...where there is a will there is a way! At least that is what I hear...

xo,
R

[Deanne]

I know everything will work out and I'm very grateful that I still have friends. I was shocked and hurt at my friend's comment about taking the "night shift," but I'm not letting it cause a rift in our friendship. I'm not perfect, either. I emailed one of the friends who I thought was laughing at me for my reactions to the demands that Good Sam was making and I think she understands my fury now. She said she wouldn't tolerate it, either. So I think she really listened. 

Tyefly - Thank you from the bottom of my heart! I'm here if you ever need me, too! I'm not self-employed, but I work for a flexible company.

[WfMonkey]

 I'm concerned about the caregiver thing. My wife of twelve years left me about 6 months after I was diagnosed and right as I started to get sick. Actually she convinced me to move out of my own house. I was so sick and tired that in the end I just went along with it.

Anyway I moved into a little apartment which is easier to manage when you have no energy and my neighbors are great; very caring. I've also discovered who my friends are, and I'm happy to say I have many (I lost all the possessions in the split but kept all our friends...)

As dialysis looms, however (my creatinine just passed 4) I am concerned about being forced to have a partner. I could probably convince a neighbor to act as my girlfriend, but I don't feel it's fair to ask her to do that. A close male friend offered to act as my gay partner! Made me laugh because he's such a homophobe, then made me cry because I realized what a great friend he is.

Is the partner thing mandatory for home dialysis?

[Deanne]

I've seen people here post about doing home dialysis on the own, but the center I talked to here (Portland, OR), said they won't set anyone up on home hemo without a partner. Peritoneal dialysis is a different animal though. If I have to start dialysis, I'll do PD and I'll be able to do this without a partner. I live alone except for a handful of cats and dogs.

[willowtreewren]

WfMonkey,
The partner does NOT have to be a spouse, or girlfriend or boyfriend. It is a CARE partner. That partner just needs to be committed to helping you during your daily dialysis.

 

Aleta

[gothiclovemonkey]

wf monkey, that IS a great friend
I certainly hope everything works out however u chose...
And, I must say, possessions can be replaced, I think u "won" in that seperation... friends are hard tocome by.

[beachbum]

I can relate to all of this. I feel very alone at times. Most of our friends still drink and like to party on the weekends. My wife is 11 years younger than me so I guess they are at a different stage in life. I don't mind hanging out. I'm not even tempted to drink anymore because it makes me feel so awful, especially the next day. But I think they are scared to drink in front of me or I stick out like a sore thumb because I'm the only guy not drinking.

Also, just being sick confuses people. I don't even like to tell everyone. It's not that I'm ashamed of my disease, it's just too hard to explain. People judge. Others are scared to be around someone that is sick. Some people just don't know what to say so they shut down.

I'm also very independent. Been this way my entire life. This is the worst disease for me because I have to rely on something or someone. I'm lucky to have my wife. But even I was put off when the transplant team told me they deny people that have no family or people close to them.

[kristina]

I'm concerned about the caregiver thing. My wife of twelve years left me about 6 months after I was diagnosed and right as I started to get sick. Actually she convinced me to move out of my own house. I was so sick and tired that in the end I just went along with it.

Anyway I moved into a little apartment which is easier to manage when you have no energy and my neighbors are great; very caring. I've also discovered who my friends are, and I'm happy to say I have many (I lost all the possessions in the split but kept all our friends...)

As dialysis looms, however (my creatinine just passed 4) I am concerned about being forced to have a partner. I could probably convince a neighbor to act as my girlfriend, but I don't feel it's fair to ask her to do that. A close male friend offered to act as my gay partner! Made me laugh because he's such a homophobe, then made me cry because I realized what a great friend he is.

Is the partner thing mandatory for home dialysis?

Thank you WfMonkey for sharing your story with us.

Your homophobe friend who offered to act as your gay-partner
certainly made my day !
 
So sweet of him, he certainly is a real friend !

It made me smile.

I think you are very lucky to have come across such caring friends.

Best wishes and good luck from Kristina.