When and HOW did u tell Friends and Family about your DISEASE?

[DomJDavis1985]

so tomorrow, March 2nd will mark a month since i have been diagnosed with Kidney Disease/Failure. and believe it or not...only recently (like since i joined this site) have i even been able to type that "yes i, Dominique have Kidney Failure"...from the time i was told about it until recently i didn't want to believe it..i even tried to lead myself to believe that i would only have to do Dialysis for a few months and then somehow they will get some bloodwork that will show that my kidneys are in fact actually improving and i have reversed the kidney disease (sadly i know this is a dream that probably will never come true)   

Since  i know this will never happen i now need to figure out how to tell my family and close friends....my family knows that i am going to Dialysis three times a week but luckily/unluckily whichever way u look at it, they do not know much about it...they are thinking its some type of treatment that i will temporarily be on that will make me feel better....the other day my aunt said to me "u look so good, those Dialysis treatments are really making u get better fast" and while YES, i do feel much better than i did before i started Dialysis..little does my aunt know that these treatments are not temporary....that i will be on Dialysis on and off for the rest of my life , unless i am lucky and get a transplant, and get a transplant that my body will not reject.little does she know that this is a serious illness that takes the lives of many people every year...

I feel that it is time that i sit down and talk with my friends and family individually about this....i am wondering if you all can recount your stories of when you broke the bombshell to your friends and family....how did u do it? how did they react? what would  you have done differently if you could ?

I think in the next week or so i am gonna take my two best friends out to eat and probably explain everything to them....what advice can u give me?

~Dominique
 

[MooseMom]

Good for you for wanting to enlist the support and for wanting to educate your friends and family.  I spoke a bit about this on DPB's relationship thread, so I won't repeat myself.

When I told my family, I stood there and cried.  The irony is that only a year or so later, my mom ended up on dialysis.  I still haven't started D.

It never occurred to me to try and keep anything secret.  But maybe that's because I'm older and my friends and family have already had their share of scary events in their lives.

[DomJDavis1985]

yeah thats the thing..i am 25 and i work in the restaurant industry..so most of my close friends are between the ages of 20-30 at the oldest, most of them think DIALYSIS sounds like the name of a Heavy Metal Rock Group lol 

I never really was a partier or drinker before, so most of them wont notice much change in my drinking habits..usually one or two martinis and i am out! lol The main thing is i want them to know that i am not in any way asking for them to donate a kidney (although if they offered i'm not gonna lie, i would not turn them down) lol I just feel like i have so much bottled inside...alot of times i am smiling and laughing with them..but inside i am thinking about death and dreading the time before i have to go get hooked back up to my machine....

[MooseMom]

Perhaps a good strategy would be to compartmentalize.  Different people in your life can serve different purposes.  If possible, save the talk about the dread and the fear of death for your time here on IHD, and spend the time with your friends for pursuits of pleasure.  They will be a good distraction for you.  We on IHD know exactly how you are feeling and why you feel as you do.  Your friends would, I'm sure, be sympathetic, but unless one of them has a chronic disease (and you never know...maybe one of them DOES but just hasn't said anything for the same reasons you haven't), they won't really understand.  This isn't because they are stupid or uncaring, but, rather, because they are not living your life.

If there is one particular friend or family member who you feel would be courageous enough to hear about all of your deepest fears, then by all means, confide in them.  And you don't have to tell everyone everything all at once.  Take your time and be selective about what you tell to whom.  You can always reveal more information as you become more comfortable with your newly changed life.

I'd be very interested to hear what you tell to whom, and how, if you feel comfortable sharing that.  Good luck, and remember, we have your back.

[Henry P Snicklesnorter]

.

[Ang]

djd1985,

the hardest person i had to tell about this was my father,because his wife(my mum) died of kidney disease when i was only 13 months old.
All i said was try not to stress to much as improvements in renal disease from 1967- mid 90s is astronomical.

my

when you tell family/friends about your situation

tell them what you've got,where your at , what the future holds

any and all questions are welcome

some will have no idea how to react,with other the questions will come thick and fast

good luck as you begin your journey






EDITED: Deleted smiley tag error- kitkatz, Moderator

[Bajanne]

My situation is very different.  The year before I was diagnosed, my brother died after 10 years on dialysis.  My dad had died of kidney failure some years before and another brother a few years after.  So it is something that is right up there for my family. So telling them was absolutely no issue.
My advice to you is just to be up front and maybe give them some material explaining what dialysis is all about.

[kristina]

When my kidneys first failed in 1971 and when (again) I was being diagnosed with ESRF in 2006
both catastrophies were caused as a result Mixed Connective Tissue Disease/Lupus (SLE/MCTD) from which I suffer.

The MCTD was diagnosed in 2003, so the diagnosis of the underlying disease was only something
that I knew about in relatively recent years. I began to wonder why no family-member had similar
health problems, as I was assured at my diagnosis that my rare variation of this disease is genetically inherited.

When I contacted my family to let every member know that I had a diagnosis of (genetically inherited) MCTD/Lupus
I received no reply. This alerted me and as time passed by it became apparent that the people
who I thought were my parents, were actually not and I had been adopted unofficially
and had not been told. The family who took me on did/does not divulge who my genetic parents are
and ever since I have been trying to find out my true genetic family.

This is not without some degree of reason:

I thought there could be the possibility that another member of my genetic family
would be suffering from the same disease and they might have opinions about treatments etc.
and I could have a chance to see their doctor and specialist.

So, I thought it was a good idea to try to find my genetic family
as it might help me deal with my medical catastrophies and sort them out.
 
Sadly, I have not yet found any member of my genetic family.

[paul.karen]

Honesty is usually the best policy.

Then again if one chooses to they could start dialysis and never tell a soul.  it is a hidden disease and even when undergoing treatment 3x a week or daily people will not know less you tell them.

I dint mind telling people about my disease.
But for a young person like yourself i have read here sadly that once they tell people,  that many times there friend's seem to shy away from them like it is somehow contagious.

So just be ready for different people to react differently.  But during the process hopefully your friends may learn something out of this.  Like healthy people can live with only one kidney.

Best of luck with everything.

[FindingNeverland]

My kidney failure was something my family already knew about because it was something that progressively happened. I had cancer when I was three so we were already accustomed to me having health issues, the treatment for my cancer is what caused my initial kidney failure. It happened slowly though, they didn't stop working until I was 16/17. If I were in a situation where it was just happening now and no prior health issues, I would just sit down with my family and friends and tell them about it, explain what it means in terms of my life and treatment, and answer any questions. I know not everyone in my family or my friends will fully grasp the seriousness of it and a lot of them don't. In fact I'm quite sure that most of them think that since I'm on the 'list' that I will be getting another kidney any day now. So when ever any of them ask about it I just explain it to them again. 

[kimi_g89]

I understand where your coming from. I am 21 and this is all pretty new to me. I found out in sept of 2010. Its hard to tell people and even harder to explain it. I got different reactions. My family was totally supportive at first, but now it seems they think I am healthy and don't really understand the severity of ESRD. Some of my friends totally blow me off cuz I can't party any more and I'm not as fun. Other friends are there for me 100% and even educate themselves on my situation, even willing to get tested to be a donor! Its hard and tiring to try and keep up with dialysis, work, and a social life. If your friends are really friends they will understand and support you! I hope it all goes good for you!

[Poppylicious]

My Blokey was much the same as you at the beginning; he really believed that the dialysis was just a temporary measure and his kidney's would one day burst back into life.  It took him a little longer than you to realise this was dream though! 

Having said that, telling people was something he did without really thinking but then, he'd been in and out of hospital a few times in the year or so prior (before he was properly diagnosed) and was relieved to have something concrete on which to hang all his medical problems. Our issue was that people didn't understand the implications of ESRD and everything that went with it.  It was a VERY long time before his mother understood and I still think she doesn't really 'get it' despite her best intentions (perhaps a bit like your aunt!)

Your family may know more than you think about dialysis, but not want to say anything.  Likewise, your friends have probably guessed that you're not quite yourself and I imagine (from what you've said) that they'll be completely understanding and supportive. 

I realise the above doesn't really help!  I think that you need to be honest.  Don't be worried about being emotional.  And try to answer any questions they may have.  I hope that the conversations you need to have go well.

*huggles*

[Brightsky69]

I just flat out told pretty much everyone about my kidney disease and dialysis. I remember telling my mom back when I first found out about my kidney failure...I was 21. She said to me "No...I don't believe that! You must have misunderstood the doctor." I had to seriously explain to her that no..it's true...my kidneys don't work anymore.

With my 2nd time on dialysis there were a ton of people who volunteered to get tested. I believe they thought it was a nice think to say but when it came down to actually getting tested....Oh no,they were not about to risk anything for little old me. 

[RichardMEL]

Initially i only told family and anyone I was close to (eg: girlfriend).. the rest  I figured didn't really need to know (with the exception of bosses at work who i felt I owed it to let them know that Dialysis would be in my future - I didn't know when, but there would be an impact - I would hate for them to be given a nasty surprise one day "Oh yeah, a few afternoons a week I won't be able to work anymore - starting next week" - when its something I knew was coming - I think they appreciated that I tried to be as up front as possible). In general though not telling a lot of people was not because I wanted to hide it or anything, but more that I didn't want to feel like some kind of charity case or that people should feel sorry for me and/or make extra allowances. I mean if I choose to show up at work I should be able to do the job right?

As time went on though I became a bit more relaxed about it and specially when dietry things might come up, like chosing a menu option for a christmas meal or something and just mentioning that meal X wasn't going to be a good option for me, or whatever, would lead to questions.. and of course when I was away X times a week doing dialyssis again folks needed to know there was a good reason rather than me just leaving because I felt like it. Since I had been at my job for 3 years already i felt comfortable enough with those around me that it would be OK, and it was. There were a few questions but basically people would be supportive and even if they didn't understand much, at least respect that it was just something I had to do. heck I could even make jokes with some guys about taking EPO and how my performance at work would be enhanced, and stuff like that.

I have always wanted to be able to do as much as I could while on dialysis, and lead as normal a life as I could, and be treated that way rather than "that guy witht he disease" kind of thing. I've always said I did dialysis to LIVE not live to do dialysis, so it was all part of that outlook for me.

Now though I'm more open and less worried about stuff like that (sorry, I mean that pre-transplant).

[MooseMom]

Let's face it...the only people who are going to really "get it" are those who are also fighting a chronic, incurable disease.  You can explain things until you are blue in the face, and while people will take away some rudimentary understanding of your situation, they still will not "get it", and frankly, it is unfair to expect them to.

Is it really that important that they "get it"?  Your family members and your close friends may need to know about your situation so that when you disappear at the same time three times a week, they'll know why!   And it would help if they understood why you're tired a lot and are just not yourself.  If you don't tell them it's because you have ESRD, they will create in their imaginations some explanation that will probably not be anywhere near the truth.  The worst thing would be if they assumed you didn't care about them anymore and didn't want to be around them.

But as for anyone else, who cares about their opinions or their expectations or their feelings or anything else?  Ultimately, people are not going to care that you can't eat potatoes or oranges...they probably won't even notice.

At the very least, you can use this opportunity to educate your friends.  You never know...one of them might have a family member who has CKD and doesn't know it, and the information you impart could save a life.  I got a call one day from my husband's secretary; her husband had gone for his annual checkup and some of his labs hinted that he may have a kidney problem.  She knew that I had CKD, so she called me up to find out more about what this number meant and what that number implied.  I was able to help someone that day because I had been open about my renal problem in the past.  Every day an opportunity presents itself to help someone in some small way.

[WishIKnew]

All I can add to this is that, in the beginning (for the first 2 years actually) I was in denial about how serious my health problems were and was very worried about everyone else's comfort level so I totally down played the problem.  I talked very little about it and when it came up I reassured everyone that dialysis was wonderful, and I felt so good and all was well in my world!  They believed me!!!  And now, as reality has set in and I'm not feeling quite so delusional, they can't figure out what's wrong with me.  So, I encourage you to be as honest as possible.....  wish I'd been a little more realistic with myself and others!

[Brightsky69]

At the very least, you can use this opportunity to educate your friends.  You never know...one of them might have a family member who has CKD and doesn't know it, and the information you impart could save a life.  I got a call one day from my husband's secretary; her husband had gone for his annual checkup and some of his labs hinted that he may have a kidney problem.  She knew that I had CKD, so she called me up to find out more about what this number meant and what that number implied.  I was able to help someone that day because I had been open about my renal problem in the past.  Every day an opportunity presents itself to help someone in some small way.

A simulare thing actually happened to me. My best friend who was pretty supportive while I was going thru dialysis...she went to a couple of doc. appts. with me. Anyway... not long ago after my transplant she called me up because she found out her older brother had to start dialysis. I remember her saying (almost in tears) "I saw what you had to go thru and I can't believe my brother has to go thru it now too." The we talked and she had about a 1000 questions for me concerning dialysis. I was glad I could help. One thing she was really afraid of was that he was just gonna die. I had to keep telling he I doubted that was gonna happen...I am stil arn't I??   

[tbarrett2533]

I don't know if this will help or not,
But when I told my family/friends I arranged for everyone to come over for dinner and sat them all down and told them.....
I did not get much support from them (and still dont, they think b/c i go to dialysis that i am curred) but they asked me alot of questions and really all I can (or choose) to remember is that I was a hott mess with my crying.....  This is still all new to me (diagnosed in september 2010).... but some days are good and others not so much... Just tell them and roll with it Good luck in your journey  

[Brightsky69]

I don't know if this will help or not,
But when I told my family/friends I arranged for everyone to come over for dinner and sat them all down and told them.....
I did not get much support from them (and still dont, they think b/c i go to dialysis that i am curred) but they asked me alot of questions and really all I can (or choose) to remember is that I was a hott mess with my crying.....  This is still all new to me (diagnosed in september 2010).... but some days are good and others not so much... Just tell them and roll with it Good luck in your journey  

I have been going thru this since I was 21...now soon to be 42. Hang in there and you will learn to cope with all this. You may even get use to it. And you may end up with a quasi medical degree. 

[tbarrett2533]

Thank you..... I keep hoping that one day I will wake up and just accept this..... And finally not be so mad!!!!