sick of the fake well wishers

[cattlekid]

Warning rant about to start....

So my husband has a large family.  Most of them don't really care for me because I am not of the same ethnic background (I won't say which one, let's just leave that out of it for now).  So whenever we get together for family functions, I'm relegated to a side table with my MIL who is also not of the same ethnic background as the rest of the family. 

My husband talks to a lot of his family members on facebook/phone and they always ask how I am doing.  He usually just gives them a basic update and moves on.  And then he usually says to me later on "hey, I talked to so and so today and they asked how you were doing". 

Today, I just lost it.  I told him to stop giving updates to his extended family other than his mom, dad and sister.  I figure if the rest of the family had no use for me in the past, they don't get to feel pity for me now.  Especially since that's where it ends.  They ask about me but offer nothing else.  At least my close family and his close family have offered assistance in many forms, most of which I have currently declined and told them I'm saving favors for when I have the transplant and need major help.

Am I being too sensitive about this?  Should I keep letting him give updates in the hope that someone will see the light and actually start caring about us instead of just giving us lip service?

[jbeany]

I'd suggest not closing the door.  Yeah, most of them are asking just to be polite, not because they actually care.  That's just how people are.  It's like asking about the weather when you talk to someone who lives far away.  Do you really give a damn if it's raining or sunny a 1000 miles away?  No.  But it's social lubricant - it keeps the conversational wheels spinning smoothly.

There might, however, actually be a few of them who really do want to know.  They care enough about your hubby to stay in touch with him, and at least a few likely recognize that your health affects how he's doing, too. 

If it bugs you to think about them inquiring when they barely talk to you face to face, the simpler solution might be to ask your hubby to cease updating you on who he's updated lately.  It will probably be easier on him to stop sharing those things with you than it will be for him to dance around how to answer the questions from his family when he's trying to grant your request to stay silent.

[Des]

No you are NOT too sensitive about this.

I had to just accept that no one really cares what you are going through. In the beginning they are all concerned but as time goes by they just ignore it.

I have no one that really cares (just hubby, not even my teenage kids care anymore) They are just tired to hear that I am sick again. They don't even visit me in hospital. I haven't seen my 2 best friends in a year and they only live 5km away.

So what I am trying to say is - accept that illness pushes people away - no matter what ethnic group they are.

  Just want to let  you know I get it. :0
   

[RichardMEL]

Dear CK,

I'm in two minds on this one.

In the first instance in a way the way they have treated you previously gives a real indication of your "place" in this family - as literally an outsider. being shoved off to a side table with the MIL must be very hurtful to be excluded (and I wonder why your HISBAND does nothing to stop that). By the same token though, perhaps it is less delbterate to be hurtful and more "trying" to show that you're not part of that central group which may just be a culural thing.. as in they're not excluding you so much because you're different but because you don't fit into whatever their cultural thing is. Either way though it's hurtful to you and you worry about being too sensitive - everyone's feelings are valid - yours and theirs. That you feel upset is enough for me that it's a significant issue.

On the other hand, when they ask your husband how you are doing, it could very well be more than doing lip service, because you are his wife, and he is important to them - some may very well care more than you think.

The problem is actually knowing, and you have no real indication apart from overt actions (ie: being placed away from the rest) which certainly seems to send a clear message on the surface.

I suppose you can go a couple of ways with this. You can resent it and do what you did asking your husband to not update extended relatives, or you can try and embrace their culture and make it clear that you damn well want to fit in. You didn't just marry your hisband, but you want to be part of his extended family. Can he help with this as a "bridge" to get your sincere intention across ? Do you even want to know any of these people or care for where they're coming from (which is also an issue).?

I appreciate that you have NOT indicated both your and their cultural ethic background because knowing can just lead to assumptions and drawing long conclusions from observers like me - the core issues though should be relevant no matter what groups are involved. The fact that there are differences is the key in my view.

This may again me a cultural thing with your husband(and he probably feels torn between you and his family - which is hardly fair for anyone) but I get the impression you feel unsupported by him with how you feel and how you've been treated? Would that be fair? Have you talked honestly with him about how this bothers you? Not an easy conversation I am sure, but if you can't be open and honest with your beloved what's the point?

good luck.....

[Brightsky69]

I don’t think your being too sensitive….I’ve been where you’ve been. A couple of people in my BF’s family had “volunteered” to be my donor….only to get a couple thousand dollars out of their mom. For example “Look what a great person I am by volunteering to get tested….now can I have 2 or 3 thousand dollars??”  Of course once they got the money they never got tested.

[CHeatherS]

Oh my goodness Brightsky!!!!!  That's terrible.  And Cattlekid, oh my, I hear you.  I hear you!  I too just want to say to my husband when people ask him about me, "just change the subject, they don't really want to know".  I even dropped out of the "church" I was going to because it seemed so shallow, and my purpose was only FOR keeping up the club.  But because my husband still goes there, they throw my name on the prayer request that goes out to everyone.  That bothers me a lot too, and I won't go into the wording on it, but it's very fake and shallow.  But, no one calls, no one stops by, they just want to be "informed" in a surface sort of way. 

But, I have to say, I agree with what the others have had to say.  You know, as I have thought about this, I can't really pull myself out of the "gossip about me", nor can I force them to care.  I have no control over how they think of me at all, and realizing that, we stop trying to control it, and get on with our lives, and the few people who do care, and do matter.

I also have to say, there is something about suffering that changes you.  And many of those who we are allowing to bother us, haven't suffered.  They even could be afraid of suffering, so avoid those who do.  Or, they could just be about their own selfish lives.  But we have a lot more to concern ourselves with.  I am sad to think about how I was to my mother when I was younger, and my brother who started in kidney failure long before I did.  It makes me sad for how I was not very understanding to them.....  perhaps I was in denial about my own knowledge that I had PKD, I don't know.  But it kind of makes me as guilty as the ones now who are totally missing me. 

But you know, there are others who have deep feelings, and thoughts, and we aren't completely alone.  And bless those here on this forum who know, and care.

I hope it helps to know you aren't alone in this dear.

Heather

[*kana*]

I think they would do this even if you didn't have health issues.  Everyone gave you great advice already. 

[cattlekid]

Thank you so much to everyone who has posted!  I really appreciate everyone's viewpoints! 

I wanted to address a few points: 

There's definitely a language/cultural barrier that is hard to get over.  My husband did not learn the family language at home because his parents insisted on only English being spoken in the house.  So now, when we go to cultural events, weddings, funerals etc. the fact that most people don't speak English is definitely a problem.  It's not a common language either so it's not like I can go to the local community college and pick up a class or two.  And add on to the fact that I married the only son and we didn't have kids and I am a pariah to most of his family. 

But I am trying....we had our wedding in his church, with all of the required cultural trappings.  Every year, we have a big dinner on our patron saint day as in line with tradition.  It requires three days of cooking on my part and I've gotten compliments on my ability to make the different ethnic dishes required. 

But then you get to the hurtful part....this culture does not believe in cadaver organ donation!!!!!!!!!  So I had to sit and listen to my SIL tell me that "oh, the church does not allow us to donate organs".  I found that incredibly hurtful.  She didn't have to tell me that.  I felt like it was a slap in the face.  I told my husband about it and he checked it out with a friend who is a priest in our church.  He hemmed and hawed and said that it might be okay to donate an organ while you are alive but you shouldn't check off your organ donor box on your driver's license because you might not get the proper medical care in case of an accident etc.  I couldn't believe the ignorance.  It made me want to turn my back on the entire family and culture.  It seemed like they would rather that I suffer my entire remaining life on dialysis. 

So if this is the kind of ignorant beliefs that I have to deal with, plus the fact that no one really cares enough to talk to ME, then I'm just going to give them the old bean-dip for now.  You know:  "how are you doing?"  "Oh, fine, have you tried the bean dip?"   

[Poppylicious]

It's a toughie ck.  Perhaps, as jbeany says, you could just ask hubby not to tell you when his family enquire and he updates them?

So if this is the kind of ignorant beliefs that I have to deal with, plus the fact that no one really cares enough to talk to ME ...

Would you rather they asked YOU instead of getting updates from your husband? Many cultures/races/religions have beliefs which some of us would consider ignorant, but it's often hard to take that step away from beliefs which you've held as truth for a very long time.  Perhaps hubby can educate them?!  It's my understanding that no culture or religion is truly against organ donation, cadaveric or otherwise, but there will always be people who say things without checking out the facts or use their beliefs as an excuse. 

I don't think you're being too sensitive.  Your feelings are important.  I hope that this issue can be resolved somehow. 

*huggles*

I too just want to say to my husband when people ask him about me, "just change the subject, they don't really want to know".  I even dropped out of the "church" I was going to because it seemed so shallow, and my purpose was only FOR keeping up the club.  But because my husband still goes there, they throw my name on the prayer request that goes out to everyone.  That bothers me a lot too, and I won't go into the wording on it, but it's very fake and shallow.  But, no one calls, no one stops by, they just want to be "informed" in a surface sort of way. 

Neither myself nor Blokey are religious, but my Mumsy is and she's made sure that Blokey is on the prayer list at her church.  I know that Blokey found that a bit uncomfortable at first, but I think there's a teeny-weeny part of him which feels a tad pleased that somewhere there are people he doesn't know thinking of him.  Occasionally we bump into people who pray for him and he's always amazed at how genuine and lovely they are, and how interested too.  It probably helps that he doesn't know these people (I know them) and they live sixty miles away though ... 

[Chris]

My simple answer is NO! Your not being too sensitive on this. Then again, I do not  know my relatives and could care less, so they do not need to know about me when I do not know about them.

[RichardMEL]

Sad to say I think that level of ignorance about donation, medical care etc, has very little to do with cultural and religious issues (though those can definitely muddy the waters to a great degree) - there are an amazing number of intelligent, non religious/judgemental people out there that would argue exactly the same - as in oh if you tick to be a donor they will harvest before anything else, when we know full well the absolute PRIORITY for any and ALL medical professionals is to SAVE THE PATIENT first and foremost. That's just fear and ignrance, born from a fear of loss of control of your situation - as in imagine you're in an accident and you have no control over what happens to - some paranoid/scared people might think that the priorities might be skewed, but any sane person knows that's rubbish. Heck any sane person waiting for an organ would rather ANY potential donor lived than died. We're not that bloody selfish.

The thing that stikes as a bit odd is on the one hand your husband's parents seemed to be activing in rather progressive manner - as in insisting English be spoken etc - which seems to be a definite nod to integrate with the society they are in, yet on the other hand, the traditions of church and culture seem to mire things down - so you have a conflict which just makes matters worse for everyone.

I don't know what else to suggest about this. It's a tough situation. It's like the SIL - she's just bluring out her beliefs in a totally insensitive way to your situation - she probably didn't even consdier what she was saying (which is perhaps even more hurtful than the words/sentiment itself in my view). I might have said something sarcastic in response like "It's easy for you to say when you're not waiting on a gift like that" but that would just be mean and lead to further conflict I guess.

What's the old saying about being able to choose your friends but not your family? 

[Chris]

I find it a little odd in a a micro or is it macro (forgot teaaching) world if it was just their cultral living alone that they would not help a fellow human to survive after ones death. It also sounds like the priest is putting faith into an urban legend about the check box on the driver's license (maybe watched to many movies to?)
 
On the otherhand I can  not argue on their rights to believe and teach what they want even though me and you feel it is wrong intellectually.
 
Most other faiths believe it is a good thing to donate after ones death as a way to help fellow man in their passing.

[Hemodoc]

I really like your rant warning at the beginning of the OP. Some also call it venting for good reason, better to let it out than keep it all bottled up. Ain't I a great one for that kind of advice.

I have had two wives in my short life, both from different cultures. Unfortunately, I should have met the second one first since we have been together nearly 18 years, 20, if you consider our dating. I did not have any understanding of myriads of little items until I spent three days in the Philippines with a missionary who had 20 years experience in understanding the Filipino culture. Simply stating yes and no answers in certain ways meant completely different outcomes to her, than to me. Those three days have come in useful in the last 8 years over and over again. Gaining a true understanding of significant aspects of your spouses culture is really a must to foster better communication.  You truly need to be able to speak his language so to speak.  Not the actual words, but instead what those words mean to him and his family. Hopefully you might be able to find someone with experience from both cultures that can bridge that gap.

As far as the transplant issue, if it is cadaveric, in my opinion, that becomes your personal decision based on your culture and your beliefs since that is your body, not theirs at issue. I understand living among their culture, but if they are here in the US, not sure if that is the place you are located, people do need to understand our culture and our belief's as well.  It is indeed a two way street. Not sure if it is your spouse that has the objection or not on that, but ultimately, that is your own personal decision, also in conjunction with your spouse. Since you mentioned cadaveric, living donation, is that also an issue?

As far as people offering support of any kind, I would take that as a genuine show of respect. Obviously, no one can join us in our own personal misery beyond empathy which sometimes just is not enough. It becomes quite easy to close up, but in the long run that may or may not be helpful. I still run into many of my old patients who always wish me the best, yet I don't really have any other interactions with them at all since I am no longer in practice. Enjoy the thoughts behind the gesture. Better this than to have none at all, I believe that would be worse. In the end, we all have to fit together into our own little world what we can accommodate. I suspect at times, to protect our fragile emotional inner self, withdrawal is a very natural response.  Just look at animals when they are hurt. Many times they will crawl under the house or hide away somewhere instead of coming to the front door as usual. Not sure why they do that nor why we crave seclusion at these times as well. Just a natural response I suspect in many ways.

Thank you for sharing and I hope you are able to work out all of your issues well at home and with your health.

God bless,

Peter

[lmunchkin]

No, to being sensitive part!  You have PKD and if others do or don't understand this disease, it's okay! They may never understand what you are going through!  Kidney Disease affects all cultures!  Not just your's or mine, but all people, races and cultures.

As the spouse of one that has this disease, I would like to say that I too occasionally speak with others in the matter of my husband.  They ask, and I will tell them how he is doing!  Some seem sincere enough, and others, I do believe are just trying to be nice!  My family members ask about him, cause I know they really are concerned not only for him, but me also! 

Sometimes, us caregivers, need someone to talk to also. We love our spouses, but know that there are some things we just can't talk about with them because of their illness. It causes them sooooo much pain. They just don't need other stuff to think about or worry about, cause God only knows what they go through.

Every day I watch my husbands health failing, and what am I to do? Just sit there and not talk with anyone about him?  Not me, I have got to talk with family and friends, (whether they help or not) to keep my sanity! They love not only him but me also.  If I shut them all out now and have nothing to do with them, then what will I do when he is gone?

I'm saying this, to make this point, let him (your husband) keep in touch with them.  Just tell him you don't need him updating you on the matter!  But don't keep him from his friends and family, cause I know what HE is going through.  My husband really don't mind others asking about him and offering prayer for him & me.  At least they thought enough to ask!

Just relax and take a deep breath, and realize that your husband loves you and enjoy what time you have together!  Let him talk to others (it truly is therapeutic) if he likes, doesn't mean he loves you less!

lmunchin   

[vanessa]

dear cattlekid, i totally agree with how you feel . i have had nothing but bad luck with my in laws as well . let me give you a bit of background first, my in laws are very wealthy they are also very judgemental. when i first became sick i was totally devastated . my partner was as well so of course when we told my mother in law she was like "oh Ive always had kidney problems" and then changed the subject. then the next time we were there she asked if i could please not care for my pic line in front of her it made he sick . now that i am getting ready to start pd my Dr sent me as a percaution to have some vein mapping done on my forearms. while there they found a huge blood clot and come to find out i am re-sistent to the meds so i have a new pic in place and it has been hell, my partner calls my mother in law and her responce is " I've had several blood clots and never had to go to such extreams..oh my gosh it just makes someone like me want to scream you cant talk about the kids grades without her saying how her grades were you cant say we were in the yard today pulling weeds without her doing the same !!! what to do ?? then she acts as if i am a faking freak ... any advice

[jbeany]

dear cattlekid, i totally agree with how you feel . i have had nothing but bad luck with my in laws as well . let me give you a bit of background first, my in laws are very wealthy they are also very judgemental. when i first became sick i was totally devastated . my partner was as well so of course when we told my mother in law she was like "oh Ive always had kidney problems" and then changed the subject. then the next time we were there she asked if i could please not care for my pic line in front of her it made he sick . now that i am getting ready to start pd my Dr sent me as a percaution to have some vein mapping done on my forearms. while there they found a huge blood clot and come to find out i am re-sistent to the meds so i have a new pic in place and it has been hell, my partner calls my mother in law and her responce is " I've had several blood clots and never had to go to such extreams..oh my gosh it just makes someone like me want to scream you cant talk about the kids grades without her saying how her grades were you cant say we were in the yard today pulling weeds without her doing the same !!! what to do ?? then she acts as if i am a faking freak ... any advice

My Advice - Send a notice to your local papers and the science departments at the big universities that you have officially identified the center of the universe.....

Seriously, you can't change her - she's never going to be able to hear anything that she isn't going to be able to twist around to make it all about her, her, her.  The only thing you can change is your approach.  Keep a picture in your head of the sun, moon, and stars swirling around a big black hole, and spend your conversations with her asking about her and only her.  Compliment her on everything, and volunteer nothing about yourself.  You still won't get any emotional support from her, but at least your interactions with her stop being a competition.  Plus, the added bonus that being really nice to rotten people just makes them suspicious, twitchy and confused....
This approach enabled me to deal with my crazy step-mother for years!

[lmunchkin]

Very Well put, Jbeany!  It is all in the "approach". My in-laws have all passed on, but I went out of my way to be accommodating them whether I liked it or not.  Guess that makes me FAKE!  I do not think so, I think I try more to keep peace within the family.  I guarantee you, hubby, has a hard time with my family members, but has never expressed it to me.  Probably cause if I see any of them trying to "put him down", they know that I had better not find it out! 

Bottom line is I do love his family and he loves mine!  Doesn't mean we have not had our differences but we all get along!


lmunchkin

[vanessa]

  jbeany you are so funny i swear i haven't st oped laughing since i read your post thank you for your true kindness

[jbeany]

jbeany you are so funny i swear i haven't st oped laughing since i read your post thank you for your true kindness

We do what we can!   

[kitkatz]

When I figured out how to deal with my sister- has to be right about everything- I have a very nice relationship not disagreeing out loud with her.

[jbeany]

When I figured out how to deal with my sister- has to be right about everything- I have a very nice relationship not disagreeing out loud with her.

My grandmother was like that.  If she decided it was Thursday instead of Wednesday, you couldn't do a thing to convince her otherwise.  If you showed her that day's paper, she would say the paper boy screwed up.   If you turned on the nightly news to hear them announce the date....she'd say it was a rerun!

[RealityCheck]

Sigh.  Inlaws.  I get it.

[paris]

I found that people didn't really want to hear the answer to "how are you doing".  They wanted to hear "I am fine" and talk about something else.  And no one really took the time to learn about kidney disease or the reality of it.   Now they want to know if "my body has accepted the new kidney yet"?   Yep, my body accepted it and I am cured!           I am sorry you are having these differences.  And it stuns me that people will say that they would never donate an organ.   Keep venting to us -- we all understand what you are talking about!

[bluesgirl]

I found that people didn't really want to hear the answer to "how are you doing".  They wanted to hear "I am fine" and talk about something else.  And no one really took the time to learn about kidney disease or the reality of it.   Now they want to know if "my body has accepted the new kidney yet"?   Yep, my body accepted it and I am cured!           I am sorry you are having these differences.  And it stuns me that people will say that they would never donate an organ.   Keep venting to us -- we all understand what you are talking about!

I feel the same way, and sort of felt like I was the pissy ungreatful one. I have a problem with the terms "when you are well again" and "get well soon," I know that might be mean of me and that people only wish well, but those sayings just remind me that I never wilol get completely well. Also, I find it hard to be around aquaintances, partly because I have to explain te disease over and over again to everyone, and partly because I feel I don't have as muc in common with them anymore: " I went to te movies last weekend andten I went to a restaurant and had a great dinner, what did you do?" "I spent the weekend at home being exhuased, sleeping a lot having fevers and feeling like shit." I tink that may also have to do with the fact that you become unreliable in some way,when people ask if I want to do something tomorrow or next week or watever, all I can say is " if I feel well enough", knowing that a billion things can get in the way. Anyways 

[WishIKnew]

Along the same lines - I just got home from the hospital (infection, septic, lost my PD cath, got hemo access...) and I'm so frustrated with everyone saying, "glad you home and well again!"  They assume that just because I'm not in the hospital I'm all better.  I WISH!