How to make friends and family understand?

[romanyscarlett]

I was wondering whether anyone had any tips on helping friends and family understand how you are feeling?  I have tried explaining how I feel to them but most of the time they just don't "get" it.

I know how hard it can be to say the right things to someone who is sick as quite often the words are not easy to find. I know from my own personal experience when an old work colleague was diagnosed with cancer how difficult it was to find something positive and meaningful to say to her without sounding like a cliche so I do appreciate it must be hard for friends and family when they talk to me about my kidneys.

I'm getting sick of all the terrible advice though.  I keep hearing the words "think positive and everything will be ok" and it makes me want to scream.  I know that positive thinking can be a good thing but it's the way healthy people say it as though it's a miracle cure. 

If I say that I'm tired I usually get a response of "have a nap then" which probably makes perfect sense to the healthy person saying it but for me it's pointless. Having a nap does nothing to alleviate the fatigue.  I try and explain that it's not the same kind of tired sensation that they would feel after having a late night but they never seem to understand.

When I say that I hate having dialysis because it's so boring having to sit there for hours on end hooked up to a machine without being able to move I usually get the helpful response of "well at least you can watch tv while you're there" as if that makes it all better.   

I hate complaining most of the time because whilst I am ill and the treatment is far from pleasant, I try to remember how lucky I am because in the grand scheme of things, there are many people out there far worse off than I am.  I have a roof over my head, I'm not starving and at least I'm having dialysis rather than dying.

The problem is that all the bad advice and preaching about positive thinking makes me feel very isolated which in the long run is making things worse for me.  If I could just get a couple of people close to me to understand how I feel then maybe it would help.  If anyone has any suggestions on how to help others understand things from a renal patients point of view, they would be greatly received!

[Des]

I really think that you are "in the same place" that I am with this disease.

I am sorry to say that they will never "get" it that is why this site is so valuable to us all because people here do "get" it.

There are no words to explain how we feel as it changes by the minute. I can feel fine and we can plan to do something nice only to not feel so fine the minute we get into the car to go and do it. People who really care for you will be supportive and try not to be too hard on them as they really want to do and say the right things.

Take help when it is offered - do not try to be brave and do it all yourself. 

[monrein]

I agree that pretty much no one can "get" it unless they've experienced it.  We often don't "look" ill but this illness can really take its toll on us both physically and mentally.
 

[natnnnat]

I just found this thread today: http://ihatedialysis.com/forum/index.php?topic=11062.msg187897#msg187897
It was an attempt to put together a list of the side effects of being on dialysis, to show family and friends. 
Every now and again KitKatz made a summary of the suggestions being made.  The last such summary is at
http://ihatedialysis.com/forum/index.php?topic=11062.msg299338#msg299338
Maybe it will be useful?  At anyrate, its a serious list!

[galvo]

Others just don't get it, RS but we do. Come here with your thoughts and worries. You are now part of the IHD family and it's a bloody solid one!

[RainingRoses]

I also wish there was another and a more accurate word for the "fatigue" of renal failure.  It's simply impossible to convey the reality via that overused word.

[MooseMom]

The best way to cope with this is to simply stop caring what other people think or believe.  You don't need the added burden of having to try to make them "get it" because does it really matter if they "get it" or not?  Who cares? 

The other night, I was in an angry funk because I am frankly furious that I am going to one day soon have to start D.  I have been trying to help my husband "get it"; he has been incredibly supportive thoughout all of this, but I know he doesn't really "get it"...how can he?  We plan to do NxStage, so I told him to imagine having to sit on an airplane every night for two hours without being able to get up or to even MOVE, that he would have no choice but to SIT there or else he would die, and it would be this way every night for the next three to five years (I'm hoping for a tranplant, and that's the average waiting time).  Since my husband thinks in analogies, I thought this would bring my point home (and he hates flying).  Oh, and that while he had to sit there, there were also needles in his arm (he won't get a flu shot because "it hurts").  This was one of the few times that I have tried to explain this kind of stuff to him.  I just don't bother trying to get others to "get it" because I just don't care!  The fact is that people who love you don't have to "get it" in order to be kind and supportive. I just appreciate the fact that they even TRY to show they care and let the rest of it melt away around me.  It's not worth the angst!

[Stoday]

(he won't get a flu shot because "it hurts"). 

Laugh of the month!       

[RichardMEL]

LOL MM that is a laugh indeed - sorry about that, but I do agree.. hahaha - better watch out when hubby sees the 15 guage dialysis needles come out he may faint "That's not a needle... now THIS is a needle!" (but you have to get Paul Hogan to say it for maximum effect  ).

Seriously though MM I agree with your comment to try and ignore the others who don't get it. As others have said people who haven't been here just can't understand, and it's so difficult to explain once you are there. I think it's a lot because outwardly we don't look "bad" or "sick" or anything so I think there's a bit of a disjoint for the healthy when they see someone who looks OK, but claims they aren't... it sort of doesn't go. We understand though.

Hey, get this, I even had a nurse say to me yesterday while she was taking my needles out (yes, that's right, a dialysis nurse): "You don't have the usual colour of a long term dialysis patient. You must be doing well!" - what the...?? I wasn't sure if she was trying to compliment me or what. I asked if I was supposed to look grey, green, blue(like Avatar!) or yellow... but she didn't really explain what she meant. Gaaa! And this from a nurse. oy!

My father, who is a trained dentist, did anatomy etc and understands the technical side of kidney failure, dialysis and all that still says to me on occasion "oh you look so well!" and gives me a bottle of champagne for my birthday.. I mean WTF??!  I just save it and share it with the nurses for new years....

Some people just can't get it, and it's unfortunate when they're the ones closest to you.

[cariad]

I never got the bad advice. I am not sure what I did wrong here. I don't remember anyone taking my story with anything but deadly seriousness. I had a line I used to tack on to the end of my story that I was quite fond of "It sounds really dramatic, and I guess it is a bit dramatic." Most people would answer with a semi-stupified "Well, yeah!" or similar. I feel for people who get the annoying little mantras and daily affirmations. The only place I had real issues was with my husband. I felt he was not taking his own risk seriously enough (he was my donor) and part of me wanted him to back out (the rest of me was horrified at the thought). He never really understood that, while I am not much of a planner in daily life, I wanted to know exactly what was going to happen if I died. This was not an invitation to try to convince me that I was not going to die, because I already knew intellectually that the chance was small, but I did desperately want to have some peace going into the transplant. He never really grasped this concept.

I think unfortunately you need to be brutally honest with those closest to you. Tell them as nicely as possible what helps and what doesn't and how they can support you. If my husband says something clueless, I try to tell him without starting an argument. (This is a technique I have yet to perfect!) More importantly, though, when someone says something helpful, I try to praise somewhat lavishly to reinforce the behaviour. Something like "You know, I  just was feeling awful at the start of this conversation, and you've really cheered me up. Thank you!" This of course is not possible if they never get it right, but like I said, I really have no experience with that situation.

Good luck!

[RichardMEL]

I think unfortunately you need to be brutally honest with those closest to you. Tell them as nicely as possible what helps and what doesn't and how they can support you. If my husband says something clueless, I try to tell him without starting an argument. (This is a technique I have yet to perfect!) More importantly, though, when someone says something helpful, I try to praise somewhat lavishly to reinforce the behaviour. Something like "You know, I  just was feeling awful at the start of this conversation, and you've really cheered me up. Thank you!" This of course is not possible if they never get it right, but like I said, I really have no experience with that situation.

Good words here I think. I mean our close loved ones, who love us (or are supposed to, anyway  ) should be able to "handle the truth" (imagine Jack Nicholson here). I think it is fair to be honest and express, or try to, when we're feeling frustrated by bad advice/cliches, and that they don't really help.

At the very least even if they can't understand they should do their best to support us.

[RightSide]

I also wish there was another and a more accurate word for the "fatigue" of renal failure.  It's simply impossible to convey the reality via that overused word.

How about "malaise"?

That's what physicians call it too.

[MooseMom]

I recently had my annual checkup with my gyn.  She's 40 and a marathoner.  She knows I have CKD but freely admits that she has no knowledge in this field and will always ask me for my input on her advice.  Anyway, she asked me if I used anything special on my face because I look so well and have no wrinkles, and she is not the first medical person to tell me how well I look.  Far from being offended, I am delighted that I don't look sickly and renally challenged!

I am in complete agreement with cariad in that you need to tell the people who matter to you what helps and what does not.  They may be trying to comfort you in ways that they themselves would find comforting.  My husband, for instance, likes to hear me say, "Everything will be fine" when he has a problem.  I despise that.  There have been too many times when I have worried about lab results, and he has said, "Oh, you'll get to the doctor's only to find that your numbers are just the same as they were last time.", and that didn't turn out to be the case.  He was just making that crap up.  He'd say, "It will be OK" and I'd respond, "You don't know that."  Needless to say, he doesn't do that any more, but I had to explain to him that while he thought he was being optimistic, I felt he was being dismissive of my fears.

[cariad]

They may be trying to comfort you in ways that they themselves would find comforting.  My husband, for instance, likes to hear me say, "Everything will be fine" when he has a problem.  I despise that. 

See, and I sometimes like hearing everything is going to be OK, and my husband at times has refused to say that because he argues that he does not really know that it will be. With certain issues, like financial matters, I like to hear confidence.

I had quite the row with Gwyn a week or two ago (shouting, losing all perspective, the works!) and this is where assuming that someone else finds the same things helpful as you do can lead to disaster, as can refusing to listen and learn when it comes to providing support to another person. It all started innocently enough. (Doesn't it always?) I asked if he remembered, as I think I do, that the surgeon said I would have a new, lower Prograf target in September. Gwyn responded with something like "It makes sense, because that is when they will start to wean you off the drugs." I am a very language-oriented person and believe that how one phrases statements matters. I detest the word 'wean' in this context because it makes me think of infants and puppies, not a capable, outspoken adult. Further, I resent the implication that tapering off the drugs is something that will be done to me, rather than being framed as an active participant, even the driving force behind these moves. (I always cringe when I read posts with this type of phrasing, too. "The doctors have decided that they will do this to me...." It's a personal hang-up.) So, I explained this to Gwyn, and rather than saying "OK, I didn't know that but now I do so let me restate it this way", he defended his statement. Danger!!! She's done this all her life, Gwyn!!! Retreat!!!

Not ready to give up, I compared it to his need to control the way he is defined by pointedly describing himself as Welsh. I know this is important to him, and I know why, and I believe in his desire and right to these basic definitions. I have corrected passport control agents in the UK who would ask "So, your husband is British?" and I would say "No, he's Welsh." You better believe I got looks that said "I'd always heard Americans were this stupid, but I've never encountered it personally." This was my way of showing my support for his identity.

Anyway, Gwyn kept digging a bigger hole for himself, we had a shouting match at 2AM, and then he slept on it and said the next morning that he understood how it important it was to me to not hear any words that fail to entirely respect the patient's autonomy in treatment.

So, I do believe in educating people on these issues, but if they show no willingness to learn, it all goes sideways in a flash. I am not known for my even temper. 

[MooseMom]

LOL cariad...while I lived in the UK, I hated being defined as a "yankee" because I am from Texas, and people from Texas are most assuredly NOT yankees.  However, hearing Americans called "septics" did make me laugh! (Americans=yanks=rhymes with "tanks"="septics" as in "septic tanks".  I thought that was brilliant!).

I'll make sure never to use the word "wean" in your presence!

It really can be difficult to become bilingual...to learn how someone else speaks and what they really mean and what they are really looking for.  And sometimes it is hard to know exactly what kind of support you need.  I often will tell my husband that if I knew what he could say to make me feel better, I'd tell him.  I am guilty of the ultimate sin of not being forthcoming about what I want.  In all of these past 6 years of going to the neph's and hearing my lab results and watching my renal function gradually decline, I have always done it alone.  Not once have I asked my husband to go with me and hold my hand or to just be there.  And not once has he offered, which hurt me.  I don't really need him to go with me, but I would have liked for him to have offered.  He KNOWS how terrorized I feel by these appointments.  Recipe for disaster, all my fault for not being honest about what I would have liked for him to do.  I KNOW he does not have a crystal ball and cannot see inside of my little brain, but still....well, "if you don't know, I shouldn't have to tell you" sort of absurdity.  But we somehow muddle through.

[cariad]

LOL cariad...while I lived in the UK, I hated being defined as a "yankee" because I am from Texas, and people from Texas are most assuredly NOT yankees.  However, hearing Americans called "septics" did make me laugh! (Americans=yanks=rhymes with "tanks"="septics" as in "septic tanks".  I thought that was brilliant!).

I'll make sure never to use the word "wean" in your presence!

It really can be difficult to become bilingual...to learn how someone else speaks and what they really mean and what they are really looking for.  And sometimes it is hard to know exactly what kind of support you need.  I often will tell my husband that if I knew what he could say to make me feel better, I'd tell him.  I am guilty of the ultimate sin of not being forthcoming about what I want.  In all of these past 6 years of going to the neph's and hearing my lab results and watching my renal function gradually decline, I have always done it alone.  Not once have I asked my husband to go with me and hold my hand or to just be there.  And not once has he offered, which hurt me.  I don't really need him to go with me, but I would have liked for him to have offered.  He KNOWS how terrorized I feel by these appointments.  Recipe for disaster, all my fault for not being honest about what I would have liked for him to do.  I KNOW he does not have a crystal ball and cannot see inside of my little brain, but still....well, "if you don't know, I shouldn't have to tell you" sort of absurdity.  But we somehow muddle through.

HaHa! A Texan being called a Yank! That is superb! I consider myself a  naturalized Californian (parents moved there when I was a kid) so yankee is a neutral term to me. Never saw it from a Southerner's view. And I would have an impossible time accepting 'septic' since it brings up thoughts of disease and toilets. Never heard that one, but the Welsh (and the Brits that Gwyn hung round with) were not prone to bursting into Cockney slang.

Yeah, it is doing yourself no favors refusing to give him a basic primer on what you want/need, but I've taken that stance, and I'm sure most others have, too. When Gwyn and I first started this trek, UCSF sent him a donor packet and Gwyn did not fill it out. It sat on our counter top for weeks. I was fuming, but of course, I just shot him the evil eye constantly and did not actually say what was bothering me. We had it out one night over it, and he said he thought UCSF would call and remind him to do it. There are not enough synonyms for 'never' to handle this misunderstanding. I don't like having Gwyn at my appointments so much, I get embarrassed way too easily. When I know there will be an argument between me and the doctor, then I want him to come along. So, using this criteria, he goes to most of my appointments! (Ha! Only kidding!)

[Stacy Without An E]

I know exactly what you mean when you say its hard for the "norms" not to understand.

My parents and sister are very caring people, but I NEVER talk about Dialysis with them.  Ever.  And its not for the reason you think.

I hate worrying them.  I remember vividly the faces of my parents when I was originally diagnosed with glomerulonephritis around ten years old.  I didn't realize it then, but I've felt tremendously guilty about putting them through that experience.  I'd rather carry the guilt the remainder of my life than worry them anymore.  They've been through enough.

That's also why you'll find me wandering around IHD from time to time.  Its my only outlet (besides my blog) for what I, and everyone else here, is going through.

[romanyscarlett]

Thank you to everyone who replied, you've given me some really great advice.

I know I shouldn't place so much importance on what other people think but it does bother me quite a lot.

I used to be a very compassionate person and would be quite sympathetic to people who were ill or who had some kind of personal problem but now I find myself becoming cold and uncaring.  When someone recently complained to me that they were feeling a bit under the weather and they thought they had a cold coming, I practically snarled at them and said they had no idea what being ill truly feels like.  A few days ago I met with my best friend and she was complaining about her boyfriend of 3 years still being possessive.  We nearly got into a huge fight because I just could not find it in me to give her any sympathy.  All I could say was "it's been 3 years, he's never going to change, make your peace with it and either get over it or leave him. Stop complaining to me about it because in the grand scheme of things, you're not dying".

This is very out of character for me and I don't want to become someone that people are afraid of talking to for fear of upsetting me further or that I'll just be mean to them in return.  That's the main reason I wanted some advice on telling friends and family how I feel, so that they understand why it's hard for me to be sympathetic when one of them gets the flu and that I have more important things to think about than listen to them complain that they can't get a babysitter. 

I like the idea of showing people the list of symptoms that we renal patients experience and I would like to thank natnnnat for the suggestion.  I'm going to construct a letter containing the symptoms as well as some humorous text to lighten it up a bit and then I'll send to the people I care most about.  If it works then great, if not then at least I've tried!

[Zog]

I'm not a renal patient and I don't know if I will ever get it.  I've been trying to figure out my wife for years.  She grew up with this problem so she has some feelings and responses hardwired into her that aren't exactly normal.  She doesn't complain much anymore or ask "why me?".  She actually doesn't think newer dialysis patients get it.  And she knows the general public doesn't.

She does still get offended when normal people think she can't do things or give her uninformed advice.

She has picked up some interesting habits along the way.  She uses a brand new freshly laundered towel for just about anything involving the bathroom.  She picked that up during her super sanitary PD days.  I would install another towel rack for her, but she would never use it.  She likes eating ice.  She didn't like spicy foods for a long time until her last transplant.  Her thought was that spicy = more drink = more dialysis so she didn't like Mexican food or Buffalo Wings until a few years ago.  It takes me awhile to "get" why she does what she does.

Despite all of her quirks and dialysis, she would like to be treated like she doesn't have a problem most of the time.  She likes being treated like someone who will live a long life and who can do most everything a normal person can as long as it doesn't interfere with her dialysis treatment schedule.  She appreciates people who want to be educated.  She doesn't mind talking about it, but she wants to be more than the girl on dialysis.  She doesn't volunteer that information until she has known you awhile.  She doesn't like it when someone assumes things about her or thinks she is always very ill.

[RichardMEL]

I used to be a very compassionate person and would be quite sympathetic to people who were ill or who had some kind of personal problem but now I find myself becoming cold and uncaring.  When someone recently complained to me that they were feeling a bit under the weather and they thought they had a cold coming, I practically snarled at them and said they had no idea what being ill truly feels like.  A few days ago I met with my best friend and she was complaining about her boyfriend of 3 years still being possessive.  We nearly got into a huge fight because I just could not find it in me to give her any sympathy.  All I could say was "it's been 3 years, he's never going to change, make your peace with it and either get over it or leave him. Stop complaining to me about it because in the grand scheme of things, you're not dying".

I like this quote. Well I don't like it in the sense of "isn't that great!" but more I understand it very well. What I get from this is that it's all about perspective, and it's hard when those of us who have to deal with these "real life issues" to comprehend what we see as being far more trivial issues.

When I feel like this I have to remember that I am not the centre of the universe and while my problems are important to me, I have to understand that even if I think someone else's issues aren't that important in the grand scheme of things, they ARE important and worrying to THEM. So I try and put myself in their shoes to think about how they would be feeling trying to deal with whatever it is (bad cold, partner troubles, whatever).

At the end of the day I like to think that I don't go around acting that my troubles are more important than anyone else's because I've got a terminal disease, dialysis, blah blah. I also try to not envy those whoose biggest issue of the weekend is if they can afford all the drinks they want to have when they get blotto and if they should sleep with that person or not. 

What dialysis has taught me I think is to not sweat these small things. If a friend whinges to me about whatever their problems are. I like to listen, and help if I can. I don't like the idea of just sitting here thinking it's all about me or anything.

I do totally get what you're saying though because inside I do think those things!! It would be nice if everyone would have some perspective about these things, but hey if they don't have to deal with these kinds of issues - isn't that a blessing for them?

[Zog]

Oh, another thing I thought of about friends and family not understanding.  Please stop offering to come see my wife when she is in the hospital, if you won't bother to come see her when she is well.  I think some people think she is going to die every time she goes in there for something and they need to get their last visit in.  My wife going to the hospital is about as routine as my 11 year old car going to the shop.  It happens often, but it always comes out alive.  I don't mind people coming to visit just please come see her when she is well sometime.

[Des]

Hubby told me something  this weekend that made so much sence I thought I'd share.

If he does not love you the way you want him to, it does not mean that he does not love you at all. (my stepdad)

So... I think we (I) can sometimes be too critical.

[romanyscarlett]

I wrote a short light hearted letter and sent it to my closest friends. I can honestly say I was amazed by some of their replies. I had no idea they cared as much as they did and I now feel a million times better than I did last week.

In the letter I made a few jokes as I didn't want it to be deathly serious and I also included a paragraph about finding it hard to be as caring as I used to be because of everything that was going on right now.  At the end of the letter I added a few of the side affects of renal failure so they could see at a glance how many things we have to cope with on a daily basis.

I got some lovely replies from people which brought tears to my eyes. Everyone said they were so grateful for the letter because it gave them an insight into how I was truly feeling rather than having to try and see through the bravado that I put on most of the time. I also found out that one of my friends has been so upset about my health that she has been reduced to tears on a number of occasions so she had been avoiding talking to me about my illness in case she projected some of her unhappiness about the situation onto me and made things worse.

If anyone else is struggling with getting friends and family to understand how they are feeling, I would strongly recommend writing down all your feelings and sending to the people you care most about. You might end up amazed by what you get in return.

[*kana*]

The way that I deal with this is I don't talk about my disease to people that don't understand.  Sorry to be blunt, but they will never fully understand unless they go through it themselves.  Life is full of not understanding other people and we are all guilty of saying and doing the wrong thing to cheer someone up.

I hope things get better for you.  Take care

 

[Rerun]

This is a fun thread to read..... just so you know you are not alone in your thinking.

                   

http://ihatedialysis.com/forum/index.php?topic=65.0