Outkast in the family

[502Blues]

Is anyone else the only member of the family with health issues? Im unique in a lot of ways and most of the time I love being different but I have come to hate it on the holidays. I dont think any of my extended family members really understand what dialysis is or even care to know. I hate that they try to treat me like some bed ridden,on his deathbed type individual, I hate the pity in their voices, and I hate being asked "how are you feeling" like Im some frail elderly person. I know I should be at least grateful that they care enough to ask but I dont see them asking anybody else that question. I get around and look as well as everybody else, do they have to single me out just because Im on dialysis, and does the fact that Im on dialysis mean i cant do for myself? Thats why I dont think they really know anything about me or dialysis. I can do everything they can do, only difference is,I may tire quicker. They tell the kids not to jump on my back or play rough with me like im going to break or something. So, I have come to dread the holidays. I would rather just spend it with a friends family than my own, which I often do

[jbeany]

I've gotten that since I was diagnosed as a diabetic at 13.  "How's your sugar?" seemed to be the only question I ever got from my relatives and my parent's friends.  I hated it, and I still get a bit frustrated.  I realize they just don't know any better, but it's not the only thing they could ask about, you know?  I have the choice now when they ask about my health - I get to give a cheery, usually untrue "Fine!", or I can blat on about how nice home dialysis is compared to in-center.  Once their eyes start to glaze over, I get to change the subject.

Sorry to say, 502, but the only defense I've ever found that works to an over concerned "How are you feeling?" is to say "As good as can be expected.  How about you?"  Make them talk about themselves instead of focusing on you.  Just be forewarned - sometimes they only ask so they have an excuse to complain about their own lives!

[Run8]

Hey 502, I come from a very larger family. My grandmother, Well my oldest child was her 85th grandchild. She was had many more to follow. She also had 10 siblings each with large families. My grandmother and one sister alone have over 200 grand and great-grandchildren, so i would so my family and extended family is quite large. I was the only child(age that was diagnosed with diabetes, And now esrd.So going on 27 yrs.I have heard the "How you feeling". It gets old but i know they only Care. A short "good" does the job and I doing something else.

[kellyt]

Yes, I'm the only family member with a serious medical condition, so I feel your pain there.  Now, granted I transplanted pre-dialysis earlier this month, I got just the opposite from my family and friends.  I didn't look sick and generally felt pretty good, and I even seemed to get more energy when with friends and family and crash later when at home.  No one ever asked me how I was or how my donor testing was going, or if there was anything I needed, or if they needed to cook something special.  Honestly, that really bothered me.  I didn't want to be treated "different" or "special", but having someone acknowledge that I was going through some difficult times dreading the ever quickly approaching dialysis would have been nice.

Now, since transplant their responses have all been great.  They don't call to check on me daily, but when we do talk or get together they are definitely interested in my recovery.  Thanksgiving was great because they were aware of doing things right by keeping food hot and/or cold and being careful not to cross contaminate items.

Hang in there 502Blues.  We're all here for you!  Just ask!!!   

[Sunny]

I am the only one in my family with serious ongoing health issues.
I am pre-dialysis with 20% kidney function. I dread the holidays because I dread the " How's your health" line that always comes up with some of these people I see maybe once or twice a year, if less. They will stand there and critique how I appear compared to the last time I saw them and then finish up with,"It's so nice people can live with only 20% kidney function," like everything is probably normal for me. I know they aren't really interested in hearing what my life is like day to day and how much having just 20% function effects me. Now I simply tell everyone I'm fine and doing the best that can be expected. After 7 years of this BS I know enough to know they really don't care to hear the real story. As long as I'm alive.

[Deanne]

I so HATE that! I understand. I'm at 25% function, but have had kidney disease since I was 9 (I'm 45 now). Once I reached adulthood, I refused to talk to anyone in my family about health issues because I felt much as it sounds you do. Except for one sister, my family knows nothing about the state of my health. I live several states away from them and only see them once every year or two. I'm much happier this way.

[BRANDY]

502 Blues--- Im sorry you feel as you do about your family   it sounds as if they are conserned..  Say they didnt ask anything of you   Wouldnt you feel laeft out and no one cared   I hope you get to feeling better.  I feel sure You do have friends and family that do care.Maybe tey are a little sared aof you because they dont understand  tell them.

[kimcanada]

I feel like my expectations over the last 3 years has changed, the first year before I was on dialysis was the hardest.  If anyone asked me about my health I would be PISSED.  I had to come to terms with the fact that I wasn't wonderwoman  and I would be so angry at anyone that brought up the fact that I was sick.

Then came year 2 , I started dialysis and I wanted to talk about it non-stop.  But by then I had everyone scared to death to ask me anything, and finally this year, ask me if you want, and if I want to talk about it I will, and if I don't I won't

Just be honest with yourself and do and say what makes you feel good

Kim

[BRANDY]

kimcanada  I think you are right in the way you felt  sounds like you have come to terms with it.  I think most people are scared to bring it up  but are concerned or curious   thats ok   inform them  and the next meeting with them   they will be more compfortable to talk and you also will to    to alot of you I am more knowlegable about this  darn disease.  I am pr-dialysis but getting  darn close  gfr at 16%   talking and asking questions help alot.

[Stacy Without An E]

I find that most people really have no desire to hear how I'm doing.  On the rare occasion that they do ask, "How are you feeling?" and I tell them, they get that glazed look in their eyes like, "I'd rather be 100 different places than right here listening to this goon."

Most people really don't want to talk about health issues until they have some of their own.  Then these same people who didn't want to hear about your health issues, can't shut their mouth about their own.

Every year I despise the human race just a little bit more.

[LightLizard]

and now you have come to a profound understanding of the old adage;
'familiarity breeds contempt.' and who is more 'familiar' than family?

its sad, but that's how we humans are. if we are healthy and doing fine, we don't want to hear about someone that is doing badly.
it makes us feel guilty, for some warped reason. or, we over-do it and walk on eggs when they're around.

you do what works for YOU bro. screw the 'holidays.' spend time with those that treat you how you want to be treated.
to the rest of them...

[paris]

People don't ask anymore and I don't bring it up.  Sometimes I wish someone would ask me to explain what is going on.  But, if they don't ask, they don't have to worry about me.  Thank goodness I have all of you who understand all too well.   Holidays are hard. It makes me all too aware of how much I can't do that I use to do.    Maybe we should all spend Christmas together!  502Blues, sending you hugs and understanding   

[silverhead]

I'm giving away my age on this, but no big deal, but while reading through this I kept getting this mental image from the early 50's, President Dwight Eisenhower had a heart attack and of course the nation was really concerned for him (he was still the hero of WW2 to everyone), anyway, the image I have was from the cover of Life magazine, Ike was sitting on the porch of his hospital room, and embroidered of the pajamas he was wearing was "Just Fine thanks!"

[circleNthedrain]

I think this is the only place you will find people who truely understand.

[Lucinda]

A lot of my family have, or have had , renal failure.  We've had transplants, dialysis, and no dialysis.  Our family have seen it all so there is nothing unusual about me being sick, in fact, I am pretty normal in my family.  I sympathise though if you are singled out because of you condition.  I hate it when people are constantly asking me how I am doing like I am going to die tomorrow.  I know some of them care but I also know that some of them treat me as a novelty conversation piece.  This is the best place to be.  Everyone just gets it!!