Should I Tell Them I Have Kidney Disease?

[beachbum]

When is the approiate time to tell someone you met you have kidney disease? I feel like the past year I have lost friends or lost friendships before they even started because I told people my health situation. Most people look at me and don't believe I'm sick. Other than being pale when I'm anemic I look fine. I also feel judged when someone asks what I do for work and I have to tell them I'm on disability. But I don't want to lie to them either. They won't say it to my face but I can tell what they are thinking, "This guy isn't sick or disabled, why isn't he working?"

I do plan on going back to work soon. But for now it makes it tough to meet people. The city I live in is tough enough. I'm used to the laid-back west coast where people are friendly and open-minded. People here tend to keep to themselves if they don't know you and very set in their ways.

It's not like you can hide the disease forever but I have found people don't need to know. If you were to drop by my place you would have no idea I was doing home dialysis. I have a room in the back where I do my exchanges and keep all my supplies. I'm not trying to hide it, I just have pets and it's easier to have everything in one place where I can go and not have to worry about my cats getting into stuff. But it made me think, do I really need to tell people? And when is the right time and place to tell someone? Even the friends I do have that know about my dialysis barely understand. I try to tell them I have to go home and do an exchange and they don't grasp that too well. They think I can just hang out into the wee hours of the morning with them.

Mostly I feel like most people have no idea what kidney disease is. People judge. I know I don't need those kind of friends anyways but I feel like I could be missing out on some great friendships. I just want people to get to know me first instead of feeling sorry for me, or being scared, or just knowing me as the guy with kidney disease. Does this make sense?

[mcclane]

I rarely discuss my kidney issues. 

At work, there are only 2 people that know of my condition, my boss (technically, she doesn't need to know but I told her anyways - not in great detail though - that I need to do dialysis.  Reason for telling her even though i don't have to is that she'll start wondering why I am taking off work consistently for appointments.  This way, she knows and she is cool with it.  The other is our staff wellness centre.  They deal with staff medical leave so they have to know).

Other than that, I keep this issue to myself.  I just don't like talking about it.  My wife on the other hand does tell a few of her closest friends, and they do lend their support.

[Dannyboy]

Beachbum,  I'm only about 4 months into Dialysis, but I've wondered about the same "disclosure" issues you mention.

Our friends, relatives, work pals, and others all vary in their ability to understand and offer support.    That's just the way it is of course.   I've found I can't predict who will react in a supportive way, and who will 'distance' themselves from me as a result of hearing about my medical situation.    For a while, I was kind of keeping things 'under wraps'....not really telling anybody outside my closest friends, I can identify with the issues you relate.     

These days, I don't bring it up, or 'broadcast' it, but if an appropriate situation comes up, i'll mention it.     Like comforting someone who has lost a loved one in death, it is difficult for many otherwise 'nice' people to know what to do, what to say.    The woefully un-informed may be worried about 'catching something'.   

I've found the vast majority of my friends are very understanding, sympathetic, supportive, and would do anything to help if asked.

In employment-related relationships, things get more 'sticky'.....you want to be upfront, but you don't want people over-reacting, or attributing any lost work days to your kidney problems (which may not be true).

I also try to keep in mind the many people who have/are dealing with far more serious and debilitating health issues than I have (yeah even though I hate Dialysis).  It helps me overlook any negative situations with the reactions of other people.
---Dan

[Adam_W]

i rarely hide my condition. Everyone I know closely is well aware of my condition, and sometimes the topic will come up with people I don't know (cab drivers, etc.). I usually am asked a lot of questions when the topic first comes up, but I don't mind at all. I want people to know and understand what we go through, and how they can take steps to hopefully avoid it. As for when the appropriate time to tell someone is, I guess for me it depends on the person and the situation.

[MooseMom]

You are under no obligation to tell anyone anything at any time.  This is entirely your personal business, and you can keep it that way if you want.  No one is entitled to any sort of explanation.

If you decide to tell anyone, you get to decide when it is appropriate to do so.  You get to decide how to tell, too.  It's all entirely up to you.

That said, it is not a disgrace that you are sick.  What would be a disgrace is if you let something as silly as dead kidneys to defiine your life and keep you from making good friends.

People just don't care that much.  They have their own crap to deal with.  If you told them you had renal failure and that you had to go home and do an exchange, they wouldn't have any idea of what you're talking about, and they won't really care.  That's YOUR stuff for YOU to sort out; they've got their own stuff. 

When you say that people are going to "judge" you...what do you mean?  Do you mean that people are going to think that you are morally warped or socially pathologic because your kidneys don't work?  I doubt that. 

When people ask you about work, if you really want to be truthful, there is nothing wrong with saying that at the moment, you are on dialysis but that you plan to return to work as a (fill in the blank).  There are plenty of people with health issues that keep them from working for a finite period of time.

Here's the trick...people pick up on clues you give them.  If you are uncomfortable with your health situation, then they will sense it and they will become uncomfortable.  If you tell them very matter of factly and show them that you are cool with being on dialysis, then they will be cool with it, too.  And if anyone comes to the conclusion that you are sorely lacking because your kidneys don't work, then that person needs a brain transplant.

There are real jerks out there in the world, but there are also a lot of people who are kind and understanding if you give them the chance.  No one is going to "understand" unless you explain it to them.  People don't carry around medical dictionaries with them, and most don't have a crystal ball that's functional, so people are totally clueless about most things unless you take the time to tell them what you want them to know.  If you don't want them to know anything about your situation, please do not expect them to understand anything, and please do not judge them harshly.

I'd be interested to hear more about your thoughts on this subject.  This is something a lot of dialysis patients struggle with, particularly the younger people.  I always had thought that young people were less judgmental, but that does not seem to be the case.  Or, maybe because I am older, I just don't give a stuff anymore about what other people think.  Middle age can be liberating!

Good luck to you.

[beachbum]

That's one arguement I've had with my wife. I feel like she tells everyone she meets. Of course her friends know but a lot of them don't really understand, although some do. But it's a sore spot for me when she tells people that don't know us or haven't even met me yet. And it backfired on her when she told a guy at her job and he used it against me when I told him to stop flirting with her on Facebook.

I know she has the best intentions and isn't doing it to be mean or to hurt me. I don't even think she realizes she's doing it. She's just very open with people. I value my privacy a lot more than she does. It seems when she does tell someone, then they tell someone, and so-on. It's almost like that game we all used to play in grade school where we would whisper something in someone's ear and pass it around the room. By the time it gets to the third or fourth person it's completely disorted. It's bad enough that I hd a cousin recently tell me that I "trashed my kidneys" and deserve what I'm going through. He lives 3000 miles away and has no clue I was born with this condition. But that's what people do. They draw up their own conclusions, especially when they are naive what the disease is even about. And I find most people that don't have problems with their kidneys or don't know anyone that does, are very naive about kidney disease. My own mother swears that alcohol alone causes kidney disease and makes assumptions because I used to have a few beers every now and then. Nevermind that I don't drink at all anymore and barely did when I was healthier.

Hopefully I can convince my wife to try to be more careful and not tell everyone. People don't need to know. Maybe an employer like you said, but I don't feel like everyone has to know. Before I started D I thought there was no way I could conceal it but I've found that most people don't know unless you tell them. It's easier than I thought it would be. I did tell me neighbor because I knew he would wonder about the big Baxter truck every month.

[MooseMom]

i rarely hide my condition. Everyone I know closely is well aware of my condition, and sometimes the topic will come up with people I don't know (cab drivers, etc.). I usually am asked a lot of questions when the topic first comes up, but I don't mind at all. I want people to know and understand what we go through, and how they can take steps to hopefully avoid it. As for when the appropriate time to tell someone is, I guess for me it depends on the person and the situation.

OK, I admit it...I do the same.  I tell everyone.  I take the opportunity to tell everyone I know because I think it is important that people be educated.  I tell people that I'm on the kidney transplant list because, let's face it, that's pretty dramatic stuff!  And then I blather on about how AMAZING it is that these days, transplantation is so effective, and isn't THIS amazing and isn't THAT amazing.  And you know what?  It seems that EVERYONE knows someone on dialysis!  It's so freaky!  I tell my story, and then invariably, the other person has a story to tell about some other person, and it goes on and on! 

I can say hand on heart that it never occurred to me that anyone would "judge" me because I have renal disease.  Never entered my mind a single time.  I will say, though, that I do not work outside the home in paid employment, so I have never had employment issues come up.  I do realize that THAT is an entirely different kettle of worms.

(The day after I learned I was on the transplant list, I went to my local little grocery store.  Everyone there knows me, though not personally, so when someone asked me how I was doing, I excitedly told everyone about being approved for the list.  I am hoping that just one person took that piece of information home with them and maybe filled out a donor card or something.  You never know.)

[MooseMom]

Now, your wife telling people is a whole 'nuther issue.  That simply has to stop.  I know she doesn't mean to hurt you, but unless she is giving very specific and educational information, then people are going to come to all kinds of nutty conclusions like how alcohol trashes your kidneys.  You can't keep people from being stupid, but if you have NO control over what is being said to whom, then you don't have a chance against stupidity.

You are right..people think stupid things based on lack of information, and that's what your conundrum is.  If you tell people nothing, they make up some explanation for what little they do hear, so in these instances, telling them MORE about your very private issues would probably serve you well. 

It all depends how much the opinions of others mean to you.  If you are bothered by their misconceptions, then talking to them will help.  If you don't care what they think, then don't bother.  You have enough to contend with without having to educate the masses if what the masses think has no importance to you.

You are right.  People don't NEED to know.  Most don't WANT to know and, like I said, just don't care.  And because they don't care, it is easy to conceal a lot of things.

[Rain]

When I first told people 4 years ago I had renal failure, I was judged at 23 years old, most thought it was something I did to myself, when I had damaged kidneys since the age of 4 caused by reflux.  Now I don't tell people unless i have to, like my personal trainer at the gym or co workers since I can't travel outside the country for business or something like that. 

Friends I don't tell until I know them, and then i see the look of shock on their face, when I mention dialysis and they are like what, how but you look so healthy. 

My family is another story and they tell everyone, even old class mates of mine, no matter how many times I told my parents to stop telling people, they don't.  They don't seem to know that I don't want to be known for having this disease, but for being me. 

[beachbum]

On one hand I would like to tell me people to get the word out, maybe I'll meet a match sooner. But then I've had bad or awkward experiences with that. There is this guy that owns a little shop in town where I like to go. About a week before my surgery to have my PD catheter placed I mentioned to him that I was having surgery. He didn't know about my kidney situation yet. He got all quiet and weird. He always talks my ear off every time I go into his store so this was pretty uncomfortable. As I was leaving he yelled out from behind the counter, "Good luck with that thing." Lol. That left a bad taste in my mouth and then I thought to myself, "Dummy, you didn't need to tell him that in the first place."

Also, once you open up that bag of worms it seems hard to tell people the entire story. Mine is sort of complicated. If they don't know what kidney disease is then you have to explain it and why you have it. At least for me I have trouble explaining it. I feel like it's TMI for most people. I know some people mean well and just don't know what to say but it can still be so awkward.

[kristina]

I agree with MooseMom...

The older we get, the more we observe that there is hardly anyone without a medical problem...

I have never been on Dialysis but over the years my kidneys have played-up on many occasions
and I had to take a rest instead of meeting people or going out - but I have always been upfront about it
and cancelled my meetings or appointments whenever I had to cancel them.

I always tell people if it becomes necessary to tell them for common sense reasons.

Some people do not believe me because I still look too well and “it does not show”
but that is their problem and it does not bother me.
I they can't accept it and relate to me accordingly that is also their problem.
My fragile kidneys are part of my life and I can't change that.

Good luck from Kristina.

[mcclane]

On one hand I would like to tell me people to get the word out, maybe I'll meet a match sooner. But then I've had bad or awkward experiences with that. There is this guy that owns a little shop in town where I like to go. About a week before my surgery to have my PD catheter placed I mentioned to him that I was having surgery. He didn't know about my kidney situation yet. He got all quiet and weird. He always talks my ear off every time I go into his store so this was pretty uncomfortable. As I was leaving he yelled out from behind the counter, "Good luck with that thing." Lol. That left a bad taste in my mouth and then I thought to myself, "Dummy, you didn't need to tell him that in the first place."

Also, once you open up that bag of worms it seems hard to tell people the entire story. Mine is sort of complicated. If they don't know what kidney disease is then you have to explain it and why you have it. At least for me I have trouble explaining it. I feel like it's TMI for most people. I know some people mean well and just don't know what to say but it can still be so awkward.

i don't want to sound like a downer, but my wife has told a few people and while i do receive support and sympathy, i've never had anyone step up to the plate.

I think it is like a 1 in gazillion chance that someone will actually come forth and donate.

[MooseMom]

This might sound sort of stupid, but I have an autistic son, and this tactic has worked well with him, so let's maybe try it here...

Why don't we come up with a "script" of sorts for you to use to explain to others what's going on.  You don't have to tell people the entire complicated story, so let's come up with an abbreviated version to get you through awkward situations.

Let's go back to the guy in the little shop in town.  Something made you tell him that you were having surgery.  Now, "I'm having surgery" can mean all kinds of things because this guy doesn't know why you are having surgery.  He might imagine you were having a malignant brain tumor removed or an arm amputated or something really horribly catastrophic, so no wonder he got all quiet.  What do you say to "I'm having surgery."?  You can't very well say, "Why?  What kind of surgery?"  So as he's struggling to figure out just the right thing to say, he gets all quiet and weird.  Well, can't blame him!  So, if you're going to say anything at all, perhaps you can say something more like, "Well, my kidneys are failing, and I'm having surgery that will prepare me for dialysis, and that will make me feel a lot better!"  So now the guy knows you are not on the verge of death, and he's happy you are not on the verge of death, and now he doesn't have to find the right words to console someone who's on the verge of death.

There have been several threads on this forum about all of the stupid things that people say to dialysis patients/CKD patients, and we shouldn't really put people in situations where their efforts to be thoughtful just turn into inanity.  Again, if we don't take the time to explain things to people in a matter of fact, simple way, then we can't expect them to be anything but awkward and/or foolish.  If the guy in the shop didn't know your kidney situation yet, well, what did you expect him to say that would make your world all OK?  Know what I mean? 

Now, there is nothing at all wrong with wanting to maintain your privacy and deciding not to reveal medical information to people.  But there is a price to pay for that, and that price is awkwardness and ignorance on the part of other people.  If that price isn't too high for you, then that's fine; continue to say nothing.  Again, you are under no obligation at all to ever say anything.  But then you can't expect anything from others.

What's wrong with telling people you have kidney disease and leave it at that?  You don't have to open that can of worms and conduct a tutorial on the subject (although I often do.  LOL!).  Really, all you have to say is something like, "I have kidney failure, but dialysis is helping me to feel better."  I think most people would be reassured by that statement.

Mcclane is right in that the chances are very small that someone will step up to the plate for you.  But stranger things have happened.  If you receive support from friends and family, then you are blessed.  Many of us here receive little support from anyone who professes to love us.

[Willis]

My own mother swears that alcohol alone causes kidney disease and makes assumptions because I used to have a few beers every now and then. Nevermind that I don't drink at all anymore and barely did when I was healthier.

You're probably too nice to say this to your own mother, but the next time she says something about alcohol causing your ESRD, tell her that "No, Mom, it's caused by heredity, so YOU are at least half the reason my kidneys failed."

 

 

[Deanne]

I don't normally tell people. I'm not on dialysis yet, but am on the transplant list and my neph said I'll probably be called in about six months. My manager and team lead know I'm on the list. They needed to know because I'll need their help coming up with coverage when I disappear for surgery. A couple others know, but I think for them it was mostly in one ear, out the other. One of my coworkers asks sometimes how I'm doing. She has a 2-year-old who is battling leukemia, so she understands the challenges better than most.

My closest friends know, but it doesn't come up much. My family knows I'm on the list and my sisters offered to donate (didn't work out). It doesn't come up much with them, either. They don't live near me. I've never wanted to make much of it. I want people to treat me like a normal person, so I try to act like a healthy person. I go walking with friends on Saturday/Sunday (about 3.5 miles each day). I don't see much of them otherwise, so it's nothing to them if I have to go home and rest afterward.

I'm able to do my job successfully at work, so there's nothing for them to know, either. I did cancel a meeting for this afternoon because I just don't feel good and I'm thinking about going home. I didn't see the need to give details though - just "I'm not feeling well. I might go home." If canceling meetings or not being able to meet other responsibilities becomes a frequent thing at work, I'll tell the affected people why my performance has dropped so they don't think I'm just getting lazy.

I stay away from things like Facebook because I don't want my business broadcast around the world from one of my siblings innocently posting something.

I think it just depends on your privacy needs. I'm a private person. I wouldn't be comfortable having everyone asking questions, so I don't open that door.

[MooseMom]

I don't announce to people that I have kidney disease, but every once in a while, I will say something about it because it is appropriate at that particular time for whatever reason.  I have discovered that, probably because of my middle agedness, many if not most people have some sort of medical problem, and as soon as I mention my CKD, oh my goodness...the floodgates open and people will tell me everything about their own health stuff!  I'm like this sounding board.  It has made me realize that so many people need to get this off their shoulders and talk to someone they perceive will understand.  And more often than not, they will tell me that their friends/family just don't "get it", but they like talking to me because I do.  So, my own CKD serves a purpose; it puts me in a position to listen sympathetically to other people who really just need someone to unload on.

[beachbum]

My own mother swears that alcohol alone causes kidney disease and makes assumptions because I used to have a few beers every now and then. Nevermind that I don't drink at all anymore and barely did when I was healthier.

You're probably too nice to say this to your own mother, but the next time she says something about alcohol causing your ESRD, tell her that "No, Mom, it's caused by heredity, so YOU are at least half the reason my kidneys failed."

 

 

Lol. Actually it's ironic because she's a big reason why my kidneys failed. Maybe that's the reason she tries to find someone or something else to blame. I was born very sick but my mom didn't get me to a hospital until I was 8 months old. By then my left kidney was destroyed and had to be removed. My right suffered severe damage and I had to have multiple surgeries. Maybe I still would be dealing with some kidney issues today but I might have both and I would probably have a better handle on it. My brother in-law was born with the same condition but it was repaired a 6 weeks old and he's a healthy 20 year-old man today.

I try not to blame her completely but I can't help to wonder what if? But this was the hand I was dealt. I'll make the best of it. It puts a huge strain on my relationship with her though. A simple appology would go a really long way with me. Like I get it, she was young and she made a mistake. But to accept no responsibility is annoying. And to blame me for having a few beers? I would love to slap her upside the head.

[beachbum]

Moosemom, I forgot to mention, I did tell the guy why I was having surgery. I probably said too much. And I probably over explain it because people have misunderstood the disease in the past or I'm just insecure about it. I just have to practice telling people in a way that is simple and to the point without going into too much detail, that is when I'm ready.

And you are probably right. I think people that are young struggle because we see friends around our same age out doing things that we can't do or not worrying about things that we have to worry about. Also, my wife is 11 years younger than me so a lot of our mutual friends are younger. I really feel like the old man in the group lol. One of my friends is always trying to get me drunk or to go out drinking with him and I must look really lame but I just tell him I can't do that anymore. His own dad actually passed away from liver problems from drinking so you would think he would understand but he doesn't. When you are young and healthy you feel immortal. I miss those days.

[MooseMom]

Actually it's ironic because she's a big reason why my kidneys failed. Maybe that's the reason she tries to find someone or something else to blame.

Oh my.  I don't know for sure, but I can virtually guarantee that you are right in your assessment.

My husband's brother was a bright little boy until he became very ill with a mysterious fever.  He was not treated in time, and this resulted in brain damage that rendered him autistic and nonverbal.  He is now over 40 years old, and his mother in particular, who was herself emotionally abused by a mentally ill mother as a child, never really recovered from the experience, and in her guilt/rage/frustration, she managed to destroy her relationship with her other son, my husband.  I have heard that her mother blamed her for her son's plight, and back then, there was not really any support for parents of these kinds of children.  My point is that you probably don't know the depths of your mother's self-guilt.  Now, she may not feel guilt at all, but I'd just bet that deep down inside, she lives with a certain kind of horror that she cannot cope with.  She lives with guilt but cannot live with blame.  That is too much for her to cope with, so I'd bet that's why she deflects.  I don't mean to supply her with any sort of excuse for the way she treats you, but I really think it has more to do with her than it has to do with you, if you see what I mean.  If you think about it, and if you think I just may be right, then maybe that will help you cope with the negative emotions she dredges up in you.  It is hard to live with emotionally damaged people.

Dealing with ESRD is hard enough without also having to find a way to deal with it in social situations.  It's a minefield out there, but I am confident that as time passes, you will find a way to become more comfortable as you maneuver your way through.  I, too, miss the days when I didn't have to worry about what I eat or when I take my pills or what my latest labs will tell me.  It's a whole different life, and believe me when I say that there are too many times when I resent how other people can just faff about and do what they like but no, not me. 

I have to admit that I'm a bit baffled by why people feel this need to go out drinking!  LOL!  You are certainly not the first person on IHD to bemoan the fact that other people can go out and get drunk but you cannot.  I'm not sure what the appeal is, but I've never enjoyed that tipsy feeling, so when I went out drinking with colleagues or friends, I was the one with the Coke.  Of course, now I can't drink Coke, but that's a different moan altogether.  Maybe not being able to go out and getting drunk anymore is a blessing in disguise.  Your friend is stupid.

[beachbum]

I used to enjoy the occasional beer or 2. I never really enjoyed getting drunk. I always felt bad afterwards. But since my kidney disease progressed even beer became too much to handle. It just added extra fluid I had to deal with. And I knew something was wrong when my friends were peeing every hour at least and I had a few beers and didn't have to pee for hours! It actually made me retain fluid, the opposite effect. I'm ok without it though. I don't need to get hammered to have a good time.

[Riki]

When people ask me what I do for a living, I tell them I'm retired.  They tend to look at me a little funny for a minute, since I'm in my 30s.  I laugh at their bewilderment for a minute, then tell them that I'm on dialysis and waiting for a kidney transplant, but in the meantime, I'm on a disability pension.  They're usually ok with that explaination

[sullidog]

I tell my friends, I do get judged every now and then but I just let it go in one ear and out the other. I think it's interesting when one of my friends has a cold or the flu, or sick with whatever and they complain like it's the end of the world, and I have a life threatening disease and I don't complain.