What do you wish your family understood about kidney disease?

[Des]

I wish my boss would understand that I cannot plan my illness around the month-end schedule. I wish I could. A kidney stone cannot be scheduled or a kidney infection cannot be postponed. I wish he would understand that I do not get sick because I like it. I hate it just as much as he does.... more so... because I am feeling it too. 

[Poppylicious]

I wish my MiL would stop smoking so that she doesn't have to ask my Blokey to drive oodles of miles to buy her cheap cigarettes in Belgium four times a year, and make him feel guilty for not wanting to do it.  I also wish she'd realise that making concrete non-refundable plans six weeks in advance is not going to mean that Blokey will be able to tell his body/kidney's not to play up that day! 

I love this thread and can't believe I've only just read it; it's opened my eyes quite a bit. 

[Sunny]

I wish my Mom would realize my kidney disease didn't suddenly disappear.
She NEVER asks how I'm doing. I do mean NEVER! She seems to think if I look okey things are all better. I almost don't even want to talk with her anymore. It's all about being in an up mood and pretending everything is fine which requires so much energy of me that I don't even want to talk with her let alone actually be with her. Last night I did visit her and I got nothing from her. No words of encouragement, no acknowledgment of my health issues, just fluff talk about gardens and such. I give up!

[Maker]

I wish my Mom would realize my kidney disease didn't suddenly disappear.
She NEVER asks how I'm doing. I do mean NEVER! She seems to think if I look okey things are all better. I almost don't even want to talk with her anymore. It's all about being in an up mood and pretending everything is fine which requires so much energy of me that I don't even want to talk with her let alone actually be with her. Last night I did visit her and I got nothing from her. No words of encouragement, no acknowledgment of my health issues, just fluff talk about gardens and such. I give up!

I hear you Sunny!  Often my parents call "to see how I am" and the entire conversation turns into me trying to encourage and reassure them instead of the other way around    Then, for whatever reason, when I do get to see them, they don't even ask how things are going when we are in person but instead they talk about anything and everything else.  I have to continually ask God for patience and understanding with them, and remind myself often that they aren't being insensitive on purpose, but that they love me and are scared to death by my CKD.  Maybe I would be more understanding if I was a parent myself    Hang in there and I pray that God will bring you caring friends who aren't scared to talk about tough things and want to be there for you no matter what.

[Goofy]

I wish my in-laws would finally believe that there is no cure for PKD and to quit bugging me to go to some quack that can "cure" me.  Of even if they never believe it, at least don't treat me like its my fault that I'm not willing to get cured.

[Sunny]

Yah, the worst thing is having people think it's your fault for not finding that "cure" or that you must have caused it somehow.

[renalpenguin]

I wish everyone understood my diet isn't a weight loss diet... I'm not aiming for lower calories! My mom understands, but she's the only one. I mean, I don't want to go crazy on calories, but that certainly isn't an issue (sometimes I don't get even close to the calories I need- but I do try!) When I say "I can't have that macaroni and cheese" or whatever it is, I get so upset sometimes when they say "oh I used non-fat cheese so it's low calorie"  I hate being rude, but sometimes I get so frusterated I just want to yell! I wish people understood that the renal diet is different than most diets out there.

[okarol]

I wish my family understood that this isn't a temporary event in Jenna's life, that kidney disease is a life long problem that she will have to deal with.

[MooseMom]

Sadly, my family is all too well educated about kidney problems.  My mother is on dialysis because when she had an aortic aneurysm repaired, the surgery killed her kidneys.  I have a cousin whose kidney function was destroyed because of untreated hypertension; luckily, he has had a transplant.  My husband now knows his phosphorus from his potassium and even laughs at my occasional renal comedy.  So I have not had to deal with stoopid family members.

I can't believe some of the posts here, that there are people really so thick.

[Quickfeet]

I wish my work had understood that when I need a vacation I really need it. They pushed back my vacation twice then on march 31 first threatened to push it back again. I was pushing myself through each day counting on the rest I would get from my vacation. April 1, I went on medical leave. I could have kept working if I could have just gotten some time off.

[brandi1leigh]

Luckily my family is pretty understanding, my friends however....

1. I wish they understood that I Have PKD and that's what caused my kidneys to fail. Most of them assume it was diabetes, and because I am a little overweight that if I had "just watched what I ate better..." I wouldn't be in this position. I'm not diabetic!!!!

2. I wish that my friends and family understood that dialysis is hard. Yes, I'm just sitting there for four hours, but I'm not ready to go out and party when it's over. I'm tired and sick. I usually feel exhausted and have a headache. Bad days might have me cramping. I wish they understood that dialysis doesn't replace your kidneys. They seem to think that once you start dialysis, you'll feel "normal" again.

[bette1]

I wish my family understood that I feel crappy more often than I feel well... I wish that they understood when I say that I am too tired to do something that I really cannot push myself any further and that everyday things that they take for granted are often accomplished by me through pushing myself hard.

[dyann]

I have to agree with the one day just to come home to the house being clean,  I don't have the support of a spouse, but I have 3 children who are very aware of how tired i get, but they don't help the house it dirty they wait for me to make dinner and clean up even if it means I can't get on my machine until 7 or 8 at night  and if i say something they always say why are you so upset the house is fine,  yet if cps came they would take the kids  or I feel that way,  My sister is coming over this weekend to help me clean and I feel so bad that she is doing that  it makes me feel like I can't take care of my own home 

[MooseMom]

Echoing what some other posters have written, I suspect that my husband doesn't really understand that I have an incurable illness....I mean REALLY understand it.  I've told him that a transplant is merely a treatment, not a cure.  He intellectually understands that, and he intellectually understands that there is a very real risk that fsgs will attack a new kidney, if I am fortunate enough to get one, but I don't think he understands it on a more emotional level.  Or maybe he just chooses not to.  It's not easy to have to think along those lines, and if you're not the one with ESRD, you don't have to.

However, I don't really need to have anyone understand.  It's just not that important to me.  There are many awful things that happen to people that I won't ever be able to really understand, so I don't expect the same in return.  It doesn't necessarily mean that people are stupid or insensitive, rather, it is more likely to mean that they just don't have the same set of experiences.  If you've never had a disabled child, you could never understand what that does to your soul.  If you've never had an incurable disease, then you just can't know how that feels.  If it's someone that I love, I wouldn't WANT them to have the experience that would teach them...

The diet thing, though, is a problem.  Let's face it...when most people hear the word "diet", they think in terms of fat, sugar and salt.  They don't think in terms of potassium and phosphorus.  The renal diet is really pretty weird.

[monrein]

I do feel that I need people (the ones closest to me anyway) to understand what I'm experiencing, not to pity me, not to excuse me, but to maintain the connections that we share beyond the merely superficial.  I play a role in public when I'm ill because I don't want to suck anyone into the vortex of what I actually experience in the moment but I guess I do expect or at least greatly respect the efforts to truly understand, of those with whom I share my life.
 I also feel the need to do my level best to try on the experiences of others too...I find true intimacy in these attempts to bridge the distance between the isolation of our individual experiences.  My next door neighbours have a profoundly handicapped daughter...diagnosed as autistic and born without some connective tissue between the two sides of her brain.  Our relationship was on the pleasantries level until the day her mother explained to me what had happened.  I had a thousand questions and she answered them all, including some tough ones about the decision to have a second child.  We both had a good cry although we barely knew one another.  When I worked as a family therapist, I really felt privileged to be allowed entry to people's deepest secrets, fears, hopes and dreams while at the same time feeling tremendous relief that I did not have to personally go through some of those particular struggles.  I worked also with parents of developmentally delayed kids and learned so much from these people about courage and love and patience and on and on.  Those that felt I helped them may never know how mutual that process was.  We weren't able to have children and although not a choice and for several years a source of considerable sadness, it was understanding that parenthood can present as many huge challenges as joys that helped me make peace with the set of circumstances that I was personally dealt.  I never want anyone to have to experience ESRD, not even people I'm not especially fond of, but I'd like them to try to understand the road I walk and I'd like them to feel that I do the best I can to enjoy life in spite of how difficult it can be. 
Funnily enough, I'm far less interested in the details of people's "happiness" or joys.   I find struggles much more revealing and most people will struggle with many things throughout their lives.  I feel glad and pleased for them when people have good fortune, are in love or whatever else is in the happiness category but struggle builds character and I find people's ways of coping endlessly fascinating.
PS.  I don't detail my particular struggles unless someone shows some interest...you're absolutely right that they don't have to face them in their own lives and it's their right to remain blissfully ignorant if they so choose.  And of course anyone's attempts at understanding anything from an outside perspective is partial at best...heck even those of us who share the main issue of ESRD experience it differently and cope differently.

[MooseMom]

While I was still living in London, I volunteered and trained for a group that offered support to parents with children who had been just diagnosed as having special educational needs.  I came across a wide range of people who dealt with this particular spectre of despair in different ways.  Many of these parents felt profoundly isolated, and it is the loneliness that accompanies personal tragedy that I have always found to be the most crippling.

I've always been fascinated by this idea that struggle builds character.  I don't know if that is always true.  I think that perhaps struggle magnifies the character you have been endowed with.  I've seen people of great courage and determination shine in difficult circumstances, but I've also watched people disintegrate under pressure, particularly when they have not been blessed with a good support system.  Many people are transient and don't have the advantage of having lived in a place long enough to be able to build that system; if they are strong, they reach out and start building.  If they are not, then it is harder for them to be resilient.

I wish I needed people to understand.  I wish I had connections to maintain, but life is funny; sometimes you just don't get the chance to make those connections; you miss out precisely because those personal tragedies present logistical obstacles.  When you have a chronic illness or when you have a disabled child, you seem to automatically be relegated to the "other" status, and isolation is oftenh thee result.

[MooseMom]

Monrien, do you ever wonder about the people who you DIDN'T see in a family therapy context?  I may well be wrong, but I assume that people who reach out for assistance may be those who are already quite strong and self-knowing to begin with.  It makes me wonder about those who are struggling and aren't able to get help for whatever reason...money or pride or fear or refusal.  Not everyone is blessed with love, patience and courage...I wonder what those people do.  What do you think?

[monrein]

Monrien, do you ever wonder about the people who you DIDN'T see in a family therapy context?  I may well be wrong, but I assume that people who reach out for assistance may be those who are already quite strong and self-knowing to begin with.  It makes me wonder about those who are struggling and aren't able to get help for whatever reason...money or pride or fear or refusal.  Not everyone is blessed with love, patience and courage...I wonder what those people do.

Absolutely MM I wonder and also worry about those who don't get the help that could make a real difference in their lives.  I worked in an agency whose mandate was hard-to-serve youth, which meant that most did NOT want to come for counseling.  Some were court mandated, some were child protection cases, some were referred by their schools (I also consulted to the guidance department of a high school) or by hospitals following suicidal ideation or attempts and so not many of my clients came "voluntarily".  My job was to reach out and connect with them and I certainly was not always successful.  Our agency used to put a strong emphasis on outreach and I had one 16 year old client who refused to meet with me since she was very distrustful of all mental health folks...and with good reason.  I accepted her refusal but told her I'd call every Thursday at 2 pm and she could not pick up or she could tell me to F off one more time or she could meet with me if she chose.  I did that for about 6 months, every week until the day she decided to meet me and we worked together for a couple of years after that.  Pride, shame, anger, hurt, previous bad experiences etc etc were real barriers and the biggest thing I learned was the error of passing judgement on others.  So useless and so incorrect in the underlying assumptions most of the time.  Money was not an issue with regard to therapy itself as our agency was government run but the wait list was a hurdle and of course lack of resources is a huge factor in people's quality of life and the opportunities available to them in general.  You're so right about the isolation piece and  the immense fatigue that comes with the primary struggles can make it just to hard to access help. 

My colleagues  in private practice are the ones who often end up with the highly motivated clients who can afford the luxury of ongoing sessions.  My view generally is that while almost everyone could benefit from periodic counseling,  endless therapy seems weird and my goal for clients was generally to see them get back into living more functionally.

 

[MooseMom]

Oh Monrein, it must have been so satisfying for you to have been able to help so many people in your life.  It is so easy to pass judgment on people despite having so little evidence...having only assumptions and superficiality to draw upon.

You can't make people trust you, but I am so glad that your 16 year old client allowed herself to do so.  Wouldn't it be wonderful if everyone on IHD had their own personal Monrein to help them through this very difficult disease?  You could help make a lot of IHD families more functional!

[Bub]

What do I wish my friends and family could understand?  I am tired.  With working full time and in center dialysis, I am just pooped.  I know other people have mentioned fatigue in this thread, but it is worth hitting again.

Most people, when they hit the "wall" can take a break, have a cup of coffee and a change of scenery and go back to work as good as ever.  When I hit the wall, I am done for the day.  I have no energy reserves to fall back on.

[KICKSTART]

I wish my mother would not think im Superwoman and change her favourite saying of ..'oh you will get it done/sorted/finished' to ..'so do you need me to come and help? '

[monrein]

Kickstart, what would your Mum's answer be, do you think. if you straight out said "Mum, I know you're busy but could you come and give me a hand with this sorting and cleaning...just one morning or afternoon would be such a big help." 

[okarol]

  For those who may not have seen this.

[wrenchturningredneck10]

My family is pretty understanding, for the most part.  I'm more worried that something might go wrong with the transplant when I get it, and I don't think a lot of the family understands.  Friends, on the other hand, seem to basically understand that i'm sick....VERY few understand that dialysis is no picnic, very few come visit...a couple said they 'didn't want to see me like that'....and, well, it's not like I have a choice in the matter:-( 

[MooseMom]

very few come visit...a couple said they 'didn't want to see me like that'....and, well, it's not like I have a choice in the matter:-(

What a cowardly copout.