I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: KICKSTART on May 31, 2009, 08:24:46 AM
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I have noticed that quite a few of us on here have been abandoned by our families and friends, is this down to dialysis? Why when we need someone the most do they turn their back on us? Are they afraid? If so then how do they think we feel? My family havent been in touch for over 6 months now ,they dont know if im dead or alive. I see them in a different light now. I never had a big group of friends , just a couple that i was very close too and knew for over 30 yrs, the only time i hear from them is if they want to go out drinking at night , so i can do the driving. When im not well they put it down to moods, not the fact im living with kidney failure. My so called best friend sent me a txt today to see if i wanted to go out ,the same best friend who hasnt contacted me for over 3 weeks, the same best friend who lives 2 mins away , the same best friend who took 2 days to reply to MY last txt. I see them all in a different light.
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When I was first told about my kidney failure right before Thanksgiving I had decided I was ready to die at 68 years instead of going through dialysis. I was depressed and making plans to go in a few months. My friends basically avoided me. That made me more depressed. And finally about 7 weeks ago I changed my mind. I had been on IHD a month or so by then. My nephrologist (the nicest guy around and arguably the best nephrologist in town (with the exception of his father who consults on my case) told me I'd go into a coma in a matter of weeks. He said, I cannot tell you what to do. Then he said, would you like to know what I would do? Right or wrong I said yes. He said, precisely what he would, down to the last detail. I said not this week! Maybe next. So he went ahead and set up the hospital room, the surgeon, etc. right then for one week later.
Sorry I rambled, but here is what I wanted to say. Immediately all of my friends returned. I was inundated with offers of help, rides, good food and lots of company. I think they just couldn't handle my depression. I refused some of the offers because I so used to doing the help rather than received it. And they I notice that they all seem to be happier when I let them do things. God I love those people now even more than before.
Family: all if have close is one brother. He calls but that's all. Do you think he may be afraid I'll ask him for a kidney??? I wouldn't. He is much younger than I and needs all the body parts he can get.
I guess what I really wanted to say is perhaps your friends are afraid and don't want to face what you are looking at. It's not right but it is certainly understandable. If you can't go out drinking with them, could you invite them by for a cup of tea or something? Just to let them see that you are coping.
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I am closer to some members of IHD than I am to my own family.
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Hi, Kickstart,
We frail humans never know how we are going to respond to new situations. Some of us find heroism where we never knew it resided, and some of us discover that we are unable to cope with frightening conditions.
Some people say that their friends turned out to be fair weather friends when the winds of life blow in a storm and those friends seem to disappear. But they may be no more guilty of being fair weather friends, than any one else. They may just have come to the realization that they don't cope well with illness. Or they may be in denial, hoping that your condition will improve if they wait long enough.
I hope that you will find that some of your friends prove to be more sincere than they currently appear. But if not, you are sure to find a community of people who know you and care for you as you are.
I wish the very best for you.
Aleta
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Oh yea, Cheryl, I feel I made some really good friends here. Just like in any community there are those you feel close to, though you like and those you try to avoid. Weird? Twirl has been so kind to me. To hell with family, I'm glad to have such a good bud on line. Although we really should plan a Houston outing sometime.... Yes, even Aggies and Tsips can get along.......
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I have noticed that quite a few of us on here have been abandoned by our families and friends, is this down to dialysis? Why when we need someone the most do they turn their back on us? Are they afraid? If so then how do they think we feel? My family havent been in touch for over 6 months now ,they dont know if im dead or alive. I see them in a different light now. I never had a big group of friends , just a couple that i was very close too and knew for over 30 yrs, the only time i hear from them is if they want to go out drinking at night , so i can do the driving. When im not well they put it down to moods, not the fact im living with kidney failure. My so called best friend sent me a txt today to see if i wanted to go out ,the same best friend who hasnt contacted me for over 3 weeks, the same best friend who lives 2 mins away , the same best friend who took 2 days to reply to MY last txt. I see them all in a different light.
I'll do you one better, I have not seen or talked to my "supposed" best friend in three months! And yes I know that a friendship works in both directions, but see I have called her numerous times in the past year or so and she is always too busy to talk or visit. I know she's telling me the truth about being too busy, but she seems to be able to make time for everyone else, so I stopped calling her. The last time I called HER was in Oct. to tell her I was getting a transplant in Nov. The conversation ended with her inviting herself to Vegas with me for the IHD meet (which I was happy to have her along), then she stiffed me for her 1/2 of the room, as well as her 1/2 of dinner at the airport on the way home. She did find about an hour to come visit me in the hospital in early Nov. and the next time I saw here was when I ran into her at a restarant in January. She never calls to see how my kidney is working or how I'm doing.
I'm 41. I have decided that I will NOT beg people to be or remain my friend. Due to reasons beyond my control, and not kidney disease related, I have lost four good friends in the last year. All I can say is Thank God for Facebook and IHD, because I have made and/or rekindled 100 other friendships!
Life must go on! Sorry for hijacking your thread, but I'll be your friend. :cuddle;
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I think you all know that some of my best friends are right here. :grouphug; I know anywhere in the world I go, there is someone I could call to meet for dinner. Maybe I depend on all of you too much. I need to get to Texas! There are many of you in Texas!! And you are all fun :2thumbsup; This disease has taught me how to react to other's illnesses. If you can't cook a meal for someone, send a restaurant gift card. Or drop by with take out food; Boston Market makes good "home" syle meals. If you are financially well off, hire Merry Maids to come in; just once would be a big help. I am not a phone person. So long conversations don't work for me, but a short note or card is greatly appreciated. And unexpected surprise in the mail will make the whole week better. Don't say "tell me if I can do anything", just do something. So, I am trying to put this in action. I hope I can be more aware when people are ill. My sister in law had her ankle fused last week and out of work for three months. My brother is very sick, but doesn't want me to know how sick. (he thinks he is protecting me). I am trying to put more notes in the mail, write emails, etc. I am rambling. :rofl; I think people rally around some illnesses, but don't know what to do with kidney and dialysis patients. I'm just grateful to have all of you. :cuddle;
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I think a lot of what Kellyt and Paris says is oh so true!!! Especially ..Dont say' tell me if i can do anything' ..just do something.! I have txt my friend today ..no reply ..i have visited her everyday when she twisted her ankle ..when i havent felt well enough to get ready to go out ive cooked for her .. and NO i havent been asked to hers while she cooks for me. Guess some people are givers and some takers, sadly my 2 closest friends are takers as ive found out !
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One of the interesting side effects of suffering through Dialysis is to discover who really gives a damn. I find when it comes to co-workers asking about my health, I just say, "I'm fine" because once I tell them what's REALLY going on, their eyes glaze over and you can see the words dancing above their head, "Oh, why did I ask that question?"
I find that I scare people away because of my condition. My family has always been very kind and supportive, but I have also learned not to tell them any details either. My Mom will start crying on the phone or my Dad will ask lots of questions and, after a while, you just don't want to dish out worry every week to your family.
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Having kidney disease is like a friend test for me. I met my husband before I got sick, but shallow me thought of him as a nice guy that I would never date. He was one friend who never abandoned me and was with me through everything. It's funny how your priorities change. My best girlfirend may not alway be there physically for me, she has her own health issues, but I can call her 100 times a day and bitch about whatever is bothering me and she will listen. I don't have a lot of firends, but those that I do have have proved themselves to be godsends.
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Bette, how nice ... people aren't really bad. They just don't understand. Education is the key... There is education fo diabetes, heart disease, cancer of all kinds. But Kidney is such a funny word.
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No one really wants to hear about dialysis. Their eyes glaze over and I get odd reactions if I try to tell someone about it. So I come here a lot.
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We have quite a few friends who have stuck with us through it all; others fell by the way-side. I have come to realize that the ones who fell off didn't know what to say, what to do, or how to handle the magnitude of it themselves.
Our family has stayed with us -- especially my mom and dad. My dad has called Marvin every single day for the last 14 1/2 years just to "check on" him (they live two hours away from us). Daddy usually only talks to me if I'm the one to answer the phone. Most days, he talks to Marvin for 10-15 minutes and then tells Marvin to tell me "Hello" (even if I'm right there).
We're lucky; through it all, we've never felt "alone."
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"just a couple that i was very close too and knew for over 30 yrs, the only time i hear from them is if they want to go out drinking at night , so i can do the driving. "
I've had "friends" like that. The illusion of friendship is at best a friendship of a "friendship" of nessessity. If they are your friends, what would it hurt to be the designated driver? On the other hand, drunk drunks are pretty boring if you're sober. No need to wait for them to call only to be the driver. The way I drive if I am going anywhere with other people, they drive. Drunks aren't as selfish as they are insensitive.
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It seemed more to me that noone wanted to be around if I was resigned to giving up. But when I started trying to get better, everyone will ask me about it. Some have even asked if they could go with me sometime. I said maybe later when I'm more comfortable. People want to feel the fistala. One good friends gets really exciting when he hears it. The first time he started to laughed with joy. Hey, I have so many caring friends, I can't wait to get out and make some more. Or else to get to Vegas and meet some of my friends I've neverf seen before....!!!
I have a half niece ( I guess you call the daughter of a half sister) that i've not seen since she was six or seven. She and her sister lived with us during a bad time in our family. When she found this out, she and one of her daughters (whom I've never met) are coming to visit me the 20th of June. I'm really excited. And I've found lots of relatives on Facebook I'm looking forward to meeting. I would never have taken the time to do this before.
Life is not over... Thanks for my fabulous nephrologist and to one special member of IHD who convinced me to go through with this.
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You know I have had family and friends come and go while being sick. When I first got sick my dad took off to live in Los Cruses cause it was to much for him to deal with. At the time I was mad, I hated my father. But you know I have issues dealing with it, especially when I first found out. So why wouldn't others that love us have issues with it? We all deal with stuff differently, me I am a caregiver I can't turn my back on someone who needs help. But that is me. It has always been that way even before I got sick. Some people just can't do it. You can't blame them for not being able to deal with your illness when it is hard enough for you to. Ya know? That is just how I feel about it.
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I think absolutely you find out who your real friends are vs the "fair weather friends" and in a way it can be quite revealing. For example there are some people who ask how I am and I just say fine because I know telling the truth like "Oh yeah I feel pretty drained today and I cramped horribly at Dialysis yesterday" would not go down well.. then there are others who read my comments on facebook or whatever and actually come and ask me about it with concern, and that I apprieciate and feel more comfortable discussing. Like I said you get to know who is really a friend and who isn't.
and heck I know I always have the women of IHD if all else fails!!! :rofl;
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Its not a case of my friends cant handle it ..its a case of they are not interested .. Ive tried both ways .. explaining in detail how it affects me and just getting to the point of saying im ok , and like a lot of you said you see that vacant look on their face. But besides that my friends can handle it when it suits them ..they dont have a problem spending hours in my company if im driving (I think hurlock said ..so what if you are the designated driver) but what he doesnt realize is a) the price of petrol over here and the fact my friend has 2 cars , a good job, a husband with his own company, free use of her works car , while im on a tight budget to run my little car. But that aside its always 'presumed' i will drive . So my friends dont have an issue being around me when im driving , my closest friend would txt me everyday once over , when i had my horse, so she could ride it. I guess im answering my own questions here about just how good a friend they are. Sooooooooooooo how do i make some new ones ??????????
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I,ve had exactly the same reaction from family, friends and long term work mates. My brother who received a transplant has not spoken to me for 3 years, friends no longer call or come around, two in particular that I started school with 45 years ago are a miss, work mates with 30 years friendship have also disappeared into the ether.
So now rather than text, phone or e-mail them my new strategy is just to screw them and concentrate on trying to stay healthy and happy.
I can accept the way things are but the part that really pisses me off is that a lot of these people or their spouses where good friends of my wife and she on top of everything else has lost these connections.
I am not sure that all these people think I have the bubonic plague or my ill-health may be a glimpse into their own future whatever I will remember their actions.
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I,ve had exactly the same reaction from family, friends and long term work mates. My brother who received a transplant has not spoken to me for 3 years, friends no longer call or come around, two in particular that I started school with 45 years ago are a miss, work mates with 30 years friendship have also disappeared into the ether.
So now rather than text, phone or email them my new strategy is just to screw them and concentrate on trying to stay healthy and happy.I can accept the way things are but the part that really pisses me off is that a lot of these people or their spouses where good friends of my wife and she on top of everything else has lost these connections.
I am not sure that all these people think I have the bubonic plague or my ill-health may be a glimpse into their own future whatever I will remember their actions.
My thoughts exactly! My longtime friends like from High School, or friends I haven't spoken to in years, now THEY are extremely interested in my health and life. Some of these I speak to on a regular basis either over the phone, through email or Facebook. I love those friends! But it's the "friends" I've made in the last 10-15 years that have really disappointed me. The friend I mention above was my roommate in the early 90's, we did musical theater together, I was in her wedding, I'm Godmother to her daughter, blah, blah, blah. We've always been close in the past. But with her I do not believe it is the kidney disease that keeps her away. I just think she's lost interest in my life and our friendship in general. I find that extremely sad, but I'm not going to be the one to always call and always invite and always be the one who is waiting for her to "call me back". Not going to do it. Not anymore anyway.
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I've been really lucky with friends and family - all my good friends are still my good friends, and all my family are there for me. My mum comes and does the housekeeping, and the laundry - and she's 79!! I can't help wondering though, whether I might have been one of those people you're talking about in the past. I've never been very good with illness, and kidney disease is one of the hardest, cos it aint gonna get better eh? I think maybe people find it hard to deal with, cos you can't send a 'get well card' for kidney failure/dialysis. It's so ongoing (don't we all know it). I think I'd be tempted to try to hook up with other ihders in your area.
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I could tell you one of the things you could do to start making new friends, but you'd be really upset with me if I did.
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I see you in a different light..... by Doug Stone. I use to hear this song and fantasize that "Mark" in the office would be singing this about me. 8)
http://www.youtube.com/watch?v=2sh0qj8WVV4
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People are funny.... sometimes they want to be your friend or lend a helping hand or just get really busy avoiding you.... I remember in 2000 I quit my job as a microbiologist and became a truck driver and saw the country.... most of my friends and mostly my family have had very little interaction with me since them..... I loved seeing the country.... There has been many times in my past that I would go camping or backpacking , fishing or whatever and I cant get anyone to go....so I go alone..... no big deal... but again family and friends think your stupid for going alone..... I have always said ... just because you cant find some one to go do it.... just go do it....... I have been like that my whole life..... Now that I am off the road because of this kidney stuff.... Most of my family doesnt even know that I have kidney problems...... Since they turned their backs on me ( as they thought they were better than me since I became a truck driver) I will not tell them I am sick.... I wont ask them for a kidney... and I will still go and do what I can when I can....... I may not be able to go back packing for many days in the woods like I use to but I can still go catch springers or trout and go on day hikes...... And I will go..... right after Dialysis.........
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When people ask me how I am (outside of IHD), I always respond - Good, and how are you? I have found that if they REALLY want to know how I am, they will ask more pointed questions, then I am more honest and detailed. Lots of people in my family commented that they didn't want to always ask, because they knew it was draining to give the horrid details all the time - CaringBridge has been a huge help in that area. People check it if they really want to know, and I can give out as many or as few details as I would like.
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I can so relate to this thread- most of our healthy friends dropped us the first year- my husbands best friend of 10 years, that he fished with weekly, was so wigged out about the needles he abruptly stopped returning calls and so then the next three years- the rest of my husbands life- he had no fishing buddy. These same buttholes saw his funeral annoucement and CAME to his funeral. I confronted two different couples that even came to the 'after' at my home- they were contrite, but said they just couldn't deal with his issues. I asked them to leave- he died with a broken heart over this- I say f**k 'em,and feed them fish-heads!!
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I do the same. I just say "Good. Thanks." However, people that I haven't seen in a long time and they have no idea that I have kidney disease, much less just received a transplant, I feel compelled to tell them I just got a transplant because I want them to understand why I look the way I look. I know. Pathetic on my part, but it's a self esteem problem at this point. :)
I was able to read your post before posting, glitter, and I'm with you all the way! :clap; Good for you!
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I have a dear friend who came down with a very serious condition last year. She became completely withdrawn, and did not want to answer any questions about her condition. I wanted to be there for her, but she honestly wanted to be left alone. She very pointedly asked me to stop asking her questions, that she did not want to discuss her condition at all. So, I just told her I would respect her wishes and not ask, but if she ever wanted to talk, I would be there for her. She stopped talking to others altogether, and didn't respond to invitations, and asked people to not visit her in her home. She never let anyone know how she was doing, and just kept to herself. I didn't know what to do except to leave her alone. I sent her flowers a couple of times with a note to try and brighten her day. I would receive a quick thank you - but nothing more. I saw her at work, so I knew she was OK, but I truly miss my dear friend.
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Another note regarding my friend - I found myself angry with her, and it was very difficult to overcome. I tried to not let her know I was angry - she had enough problems, I couldn't weigh her down with MY feelings. But, from personal experience I know how difficult it could be to inform others, but when I knew they really cared, I thought it was right thing to do. The anger inside of me seemed irrational, but I couldn't help it. We have been dear friends and coworkers for 13 years. I was sick with worry, and a word or two would have helped soooo much, but I felt helpless which turned into anger. I'm not proud of that.
I wonder how many of us do this to our family and friends without knowing it?
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I am the 'caregiver' and I see what my husband is going through and it is very difficult. His oldest and dearest friend who is now retired hasn't called in months and months. My husband has not been dealing with all his medical maladies well and after reading this post it finally occurred to me that by being so negative he is pushing friends away. His family is very attentive and my husband isn't totally disabled yet so he doesn't need a lot of help. He gets the help he needs from me and our adult children. My husbands family all have their own medical issues, business', kids and grandkids, and busy lives. I don't know where this journey will be taking my partner of 39 years but it is quite possible the people along for the ride will just be the kids and me. So sad. Sad for him mostly.