Invisible...or they just don't care?

[cattlekid]

So last night, I had a minor emotional meltdown.  I realized that, in general, people just don’t give a damn when you have a chronic illness.  I literally have a family of over 70 people if you count up all of my aunts, uncles and cousins on both sides.  You would think that, between a big family like that, a big family on my husband’s side and friends, I’d be inundated with concern over my ongoing dialysis and wait for a transplant.

What have I gotten?  Crickets. 

I’m certainly not expecting everyone to call or email or Facebook every day, but every few weeks might be nice.  Heck, if they all coordinated and spread it around, no one would have to be bothered for more than a few minutes a couple of times a year. 

I think this has contributed to my anger at my DH for not stepping up more on his end.  Which isn’t fair to him as he just happens to be a convenient target.

I’m not Susie Special Snowflake that has to be coddled to, but I think I am certainly entitled to a bit of extra attention here and there.  I think of what I would do and have done for friends and family (a card here, a meal there, a phone call now and then) and just wonder why I’m so invisible. 

Do others get the same feeling from their friends and family?

[MooseMom]

My mother's sisters have been supportive, but they live far away and are elderly.  They have a fairly good idea of what dialysis does to you because both my mother and another aunt both spent some years on dialysis.  Furthermore, one of those aunts has a son who was on dialysis and has since received a living donor tx.  But my cousins on my mother's side have said nothing, although once I had my tx, they sent their good wishes (along with an assumed sigh of relief that they were no longer on the hook, good Christians that they are...).

I have no relatives left on my father's side of the family.

My husband's family have never EVER offered any support or help AT ALL.  Those people don't know me, so I don't care, but what astonishes me is that they never offered any support to HIM!  His parents NEVER, in all these years, EVER called to ask if there was anything they could do to help HIM, and they live just 3 effing miles away!

I have often told my husband that his family is just too odd.  They are all either emotionally absent or psychologically way off the cliff.  They just do NOT communicate to each other.  My husband's brother (who is disabled) spent three nights in the hospital with pneumonia, and we just happened to find out about it because his dad mentioned it merely in passing in a phone call that was about an entirely different topic.

I can't explain it.  People just seem to be so self-absorbed that they are blinded to anything outside of their own lives.  On the other hand, maybe I'm perceived to be a real nosey Parker because I'm always asking after this person or that person.  Maybe I'm the odd one out.

I understand the feeling behind wondering why you're so "invisible"...that's a very apt description.  It's not that you expect reciprocation of your kind gestures, rather, you just wonder if they have been sucked into a black hole of apathy and inconsideration.

[amanda100wilson]

Cattlekid, I agree with you completely.  No-one seems to give a s*** when it comes to,chronic illness.  someone only has to,break their arm and everyone is bending over backwards to help, sending cards and flowers etc.  I live in a sub-division where they have a monthly gazette and there are always stories about Mr or Mrs So-an-so and their injured this/minor op. that, with requests to remember them in people's thoughts, but ne'er a mention of us with chronic illnesses. 

a friend of one broke her arm while visiting her family in the UK.  Her husband had to fly over and immediately back again from Ca. to help her.  meanwhile, I travelled to and from the UK  on my own with my son when he was two, with all the paraphernalia that accompanies a parent with a child of that age.  Even now she still talks about when she broke her wrist, it was obviously such a big deal. 

I have blood tests like we all do so often, that it is never,mentioned, but if someone else in my family or a friend of the family has a blood test, I have to hear all about it.  I think that this is the point.  you can't talk about everything done to us medically as it is so continual that other people would switch off.  for other people though, one little medical thing is such a big hoo-ha.  the problem is , that this also means that they really have completely no clue as to,what being a person on dialysis entails.  Not just the dialysis but the myriad of other things. 

this extends further too.  A normally healthy person goes to the doctor and they gripe like mad if they are kept waiting.  when I go to the doctor, I expect to give up an hour at least to wait.  it annoys me big time, but  on the odd occasion when I have explained to clinic staff how much of my life I give up to waiting at doctors' surgeries, you can tell that they just don't get it.

sorry I've rambled, but these attitudes are one of my own pet peeves, and it would make our lives a lot easier, if people could step up to the plate and at least try and imagine the,selves in our shoes.

[Darthvadar]

Due to experience in caring on my own for my mum, I've always said that friends are God's apology for family!...

Hope things get better for you...

Darth...

[cattlekid]

Amanda, while I hate that we are having the same experience, I'm somewhat glad for the validation that it's not just me. 

I would have someone make sure that you are mentioned in every edition of the gazette.  If they can put something in there about a person with a minor operation or injury, they better damn well be able to put something in there for EVERYONE in the subdivision who is dealing with chronic illness.  It's something that EVERYONE needs to be reminded of....maybe it will spur some people to action.

As far as family, if one person starts going off about their medical procedures, I'd walk away from the conversation.  At least that's the mindset I'm in now.....I know we are supposed to "be the change we want in the world" but that crap gets old after a while.  Maybe in the future I'll have a little more empathy but I'm not at that stage right now.

Cattlekid, I agree with you completely.  No-one seems to give a s*** when it comes to,chronic illness.  someone only has to,break their arm and everyone is bending over backwards to help, sending cards and flowers etc.  I live in a sub-division where they have a monthly gazette and there are always stories about Mr or Mrs So-an-so and their injured this/minor op. that, with requests to remember them in people's thoughts, but ne'er a mention of us with chronic illnesses. 

a friend of one broke her arm while visiting her family in the UK.  Her husband had to fly over and immediately back again from Ca. to help her.  meanwhile, I travelled to and from the UK  on my own with my son when he was two, with all the paraphernalia that accompanies a parent with a child of that age.  Even now she still talks about when she broke her wrist, it was obviously such a big deal. 

I have blood tests like we all do so often, that it is never,mentioned, but if someone else in my family or a friend of the family has a blood test, I have to hear all about it.  I think that this is the point.  you can't talk about everything done to us medically as it is so continual that other people would switch off.  for other people though, one little medical thing is such a big hoo-ha.  the problem is , that this also means that they really have completely no clue as to,what being a person on dialysis entails.  Not just the dialysis but the myriad of other things. 

this extends further too.  A normally healthy person goes to the doctor and they gripe like mad if they are kept waiting.  when I go to the doctor, I expect to give up an hour at least to wait.  it annoys me big time, but  on the odd occasion when I have explained to clinic staff how much of my life I give up to waiting at doctors' surgeries, you can tell that they just don't get it.

sorry I've rambled, but these attitudes are one of my own pet peeves, and it would make our lives a lot easier, if people could step up to the plate and at least try and imagine the,selves in our shoes.

[MooseMom]

I just have to tell y'all this story...  Sorry if it gets boring, but I find it bizarre and even funny.

A couple of weeks ago, my husband, his father and I drove up to Madison to visit my husband's aunt (his father's sister), who is dying of pancreatic cancer.  Now, remember that this is a family that does not communicate, so I was the one that engineered this little outting, and I'd never met the woman.  I just couldn't bear the thought of not going to see her.  She is living with one of her nieces, well, she was until she had to go into hospice last week.

Anyway, on the way up, I made sure to ask my husband's dad how he was doing, etc, asking detailed questions about his condition and his medication.  He has a valve problem that causes Afib.  The man is 82 years old, so this is not surprising.  He is one of those old men who LOVE to talk about their various maladies, their meds and the side effects of all of their little pills.  My father was exactly the same way, so I'm good at listening and asking pointed questions.  They love that.

My loyal husband would interject with the occasional, "Oh, MooseMom knows all about that!" in an effort to remind his dad that he is not the only one with a chronic condition.  I'd trade ESRD for Afib any day of the week!  But did his dad pick up on these cues?  No, not once.

So, during the entire 5 hours that we were on the road, NOT ONCE did this man ask how I was doing.  NOT ONCE!  Despite all of the questions I asked about HIM, not a single time did he ask me anything at all.  Just didn't give a single solitary damn.  I have to say that in another life I may have been a doctor because I was truly interested in his Afib and his meds and such.  But it's still true that I was astonished by this man's self-absorption.  Far from being insulted, I was fascinated.

Even more bizarre, a few days later, I asked my husband if he had noticed how his dad never voiced any curiosity or concern about my condition, and he admitted that he had not noticed, but looking back, yeah, now that he thought about it, it WAS rather odd.

[MooseMom]

this extends further too.  A normally healthy person goes to the doctor and they gripe like mad if they are kept waiting.  when I go to the doctor, I expect to give up an hour at least to wait.  it annoys me big time, but  on the odd occasion when I have explained to clinic staff how much of my life I give up to waiting at doctors' surgeries, you can tell that they just don't get it.

My husband had to drive me to a couple of lab appointments after I had surgery because I couldn't drive yet.  In the eight years I've had to get labs done, he's never gone with me, so sitting in the waiting room for all of 20 minutes was not something he was used to.  OMG, he got so impatient, and it pissed me off, so I said, "What the hell do you think I've been doing these past 8 years?  Just sit down and relax.  I warn you that you are not getting sympathy from me."  LOL!

[Ricksters]

I can relate to all of these comments!  MY sister, my only sibling, lives in PA.....on the rare occasions that we talk, I here about all of the illnesses in the relatives up North....asking me about my disease is a short 1 sentence conversation that is turned around to be about an elderly relative, her dog, whatever....It's like if we don't talk about it, it can't exist!

Ricki

[Riki]

Every summer, my dad's family has a picnic.  It's usually just a gathering of my dad's brothers and sisters, and their significant others, but I usually try to go too.  This summer, there was a lot of the cousins there, more than there normally is, as most of them live across the country, but a few of them made it this year, with their children as well.  A few days after the picnic, I was griping on facebook about how long I'd been on dialysis and how crappy it was.  One of my cousins, who'd been at the picnic and had talked to me, commented, saying that she didn't know I even still needed a kidney.

I get a little depressed when it comes to my family.  They seem to sweep my illness under the rug.  Perhaps it's because, after 20 years of this disease, I've learned to wear the mask, perhaps a little too well.  I don't want them to feel pity for me, so even though I might be feeling like crap, they're not going to know.  My mom can see through it, most of the time anyway.  Mom thinks that since I look and act normal, that maybe they don't think I'm really that sick.  I think that if any of them could see me after a dialysis run, it would shock the sh*t right out of them, cuz then they'd see how I really am.  I can't wear the mask then, as much as I'd like to.

[cattlekid]

Riki, I had the same experience two summers ago.  I had just started dialysis that January and I had family reunions on both sides of my family (mom and dad).  So I saw almost every single one of my aunts, uncles and cousins that summer and everybody heard about my need for a new kidney.  Do you think even ONE person stepped up to be tested?  Nope.  This year, I had a heart attack on the weekend of my mom's family reunion and couldn't attend as I was in the FREAKING HOSPITAL.  Do you think even ONE person called or Facebooked to say how are you, sorry we missed you?  Nope.  I just saw a lot of Facebook posts about how fun the reunion was and what a great time they were having. 

Jerks.

Every summer, my dad's family has a picnic.  It's usually just a gathering of my dad's brothers and sisters, and their significant others, but I usually try to go too.  This summer, there was a lot of the cousins there, more than there normally is, as most of them live across the country, but a few of them made it this year, with their children as well.  A few days after the picnic, I was griping on facebook about how long I'd been on dialysis and how crappy it was.  One of my cousins, who'd been at the picnic and had talked to me, commented, saying that she didn't know I even still needed a kidney.

I get a little depressed when it comes to my family.  They seem to sweep my illness under the rug.  Perhaps it's because, after 20 years of this disease, I've learned to wear the mask, perhaps a little too well.  I don't want them to feel pity for me, so even though I might be feeling like crap, they're not going to know.  My mom can see through it, most of the time anyway.  Mom thinks that since I look and act normal, that maybe they don't think I'm really that sick.  I think that if any of them could see me after a dialysis run, it would shock the sh*t right out of them, cuz then they'd see how I really am.  I can't wear the mask then, as much as I'd like to.

[ESRD Survivor]

This is just my opinion.  I don't think people like to hear other people's problems.  It makes them feel bad, plus they have their own problems to deal with.  My dad does not like to talk about my dialysis, he knows its not a fun thing to do.  While he will ask me how I am doing, he doesn't want to hear ALL the details.  Mom is a little different, I think because she is a mom and she has taken care of two kids with kidney disease for 27 years.

I have never had one relative ask me about dialysis or offer to donate.

[brenda seal]

It is sad but true chronic illness sorts the wood from the trees and you certainly discover who you can really count on in life . We also have a very large extended family and I can count on one hand those who enquire about Laurie , let alone those who care how I am coping .
Luckily we have four grown up children who can't do enough for us and even look for ways to help . My daughter in law asks in a token way  , " Is 'Pa any better today " ? - even though my son meets us at home when the ambulance brings us back from dialysis to help put his Dad to bed .
I have sent two messages this week - one congratulating my brother who has just competed in the Kona Ironman championship and one wishing Laurie's sister well as she has just sold her family home and is down sizing . I did not even get a reply from either of them !
I rang my best friend of nearly 50 years to wish her Happy Birthday at the end of August , I got off the line quickly as she had company and suggested she call me back when she had time - still waiting for the call !
I try not to go on too much about Laurie's illness when talking to people but this is our life now and it is a fact people just can't deal with . It is our life and us who have changed not them . I totally understand why so many of you feel isolated and invisible , we do too !

[lainiepop]

Totally understand where you're all coming from!

I have no brothers or sisters but my parents and friends have been v. supportive. Both my parents were tested to donate, my dad was the better match so got his kidney 5mths ago, before i needed dialysis, dad was pushy about it, wanted it to be pre emptive, he's just turned 67. My husband would've been tested after, both my children's godmothers offered to donate as did a sis in law.

But my hubbys parents are something else! Before  my tx  they bought him a mobile phone for all he had to put up with?! And during t x op they went to Australia leaving my mum looking after me dad  my 4 yr old Son and 10 mth old daughter, the trip was planned after we told them my OP date. When i was readmitted With an infection that pushed up creatinine the mum Sent an e mail saying Sorry its all gone pear Shaped then talked bout her hol! they saw us a wk ago for 1St time since tx her friend walked in and hugged me asking how i was she ignored me for 20mins !

tbh l give up on them now! people at church have also been great. One thing i will Say is it sorts out who really cares for you and who doesn't!!

[KarenInWA]

Back in January 2011, I was going through all the tests and such to get on the kidney list. I was still pre-D at that time. On my Mom's birthday, my parents, sister and I did a day trip. While we were all in the car, I brought up to my parents that I needed to come up with a post-op plan for who would be staying with me/taking care of me after release from the hospital. My hospital wanted to make sure I had family/friend support after my surgery to insure that I woudl be getting to the appointments, have help lifting things, taking me to the store, etc etc. My own mother would not commit to doing that! She thought it was ridiculous and that they were asking for too much (wanting me to be there by 8am for blood draws, for example). My mother rules the roost in my parent's marriage, so what she says, goes. I ended up scrambling to get help from various family members and friends, and that turned out to be good enough. Fast fwd to me getting my live-donor transplant from a family member, and it ended up that my parents would not have been able to take care of me anyway, due to my Dad recovering from his own huge cancer surgery (he had surgery on 11/1/11, I had mine on 11/23/11). But, to be turned down by my own parents during my time of need was to me the ultimate slap in the face. I am not married and live alone. I do not have the luxury of a loving husband or boyfriend. I am not that lucky.

KarenInWA

[MooseMom]

Karen, I am horrified.  What's wrong with people?  Your parents should be ashamed, deeply ashamed.

[jeannea]

I have some family who care and some who don't. I have one aunt who spends a lot of time emailing my mom to tell her that my doctors are wrong all the time.

I'm sorry your family is full of jerks. I'm afraid the world has a lot of jerks. 

At least you have us, right? 

[kit78]

I have no support whatsoever.  I live alone and only talk to 1 friend. the other 2 friends have issues with their lives so I don't hear from them unless something is going on.  They know I am a very strong willed and independent person.  I spend my holidays alone as well. 
I got sick in June of this year with pneumonia and lost my transplant too.  In August, my ex died and my son was devastated.  He is not speaking with me (long story) but I feel now that the chips are down and Mom may loose her house screw her.  Yes, sad as it is life goes on.  I have to have another surgery on my arm to bring the vein to the surface for hemo and being that I live alone it scares me to death because this time will be worse.  I really wish I just had one human being that cared enough to check on me a few times a day.  I don't get out much so lack of friends is a way a life I suppose. 
I would love to chat by phone if you ever care to. Sounds like we both could use a new friend ! 

[kiddogal]

The average person has no idea what dialysis entails.  Many people are just naive, not interested, ignorant, or two absorbed in their own lives to really have empthay or sympathy for others.  That is too bad, but that is reality.  My husband started dialysis last April, and wow, it's a bitch - but he is alive and that's good   I do 99.9% of the caregiving, (he's on dialysis, had a heart transplant, has COPD, emphysema, had nine eyer surgeris, uses canes/walkers, wheelchairs)   I only have one sister who lives close by, all the other relatives live out of state.  And thank God for her!!!  Today she picked me up at 6:30 am so I could go to a surgery center and have shockwave lithotripsy (blast that damn kidney stone!) and then drove me back home, made my husband and I breakfast, helped packed his dialysis bag, drove him dialysis, then ran around and got my business mail for me, picked up two prescriptions I needed, then drove back to the dialysis center to get my husband at 5:30 pm, and helped get him and his stuff in the house.   My sister has the empathy and knows this is tough. She's had cancer twice, and I am there for her surgeries, recoveries, etc.   I only have one person who can help me, and the writer of this post has close to 70 relatives.  And none to help your husband or you??  That is crazy. 

[Lexxtech18]

As far as family goes, I have a wonderful support system and for that I am extremely grateful. Friends are also supportive, even if they don't know the first thing about dialysis or transplants. Now, on the other hand my (ex) co-workers were very nasty. When I would come into work after a treatment there would always be one woman who would berate me and expect me to just get over it, like it's nothing. Like I'm not feeling like totally craptastic! She even said to me once, "Well, if I was on dialysis I would feel just fine! I wouldn't whine like you!" I so very badly wanted to slap her upside her damn head. >.>

[Riverwhispering]

I have no family here, just "friends" and the only one that has ever offered "help" is one of my drivers that takes me to my Dialysis.  He knows I have a pellet stove and the bags weigh 40 pounds and I mentioned to him once that the nurse told me not to lift that much weight.  Ever since I told him that he always asks me how I'm doing with the pellets and when he gets me home he comes in and dumps one bag into my stove and brings in 4 more bags and lays them nest to the stove.  It is very hard for me to carry the bags myself from the carport to the stove.  Even though I don't get help from anyone else I treasure his kindness.  It really sucks to have kidney disease.

[Riki]

I think I'm really lucky to have my mom.  I know I would be totally lost without her.  I think she would be a little lost without me too, so it kinda goes both ways. *G*

The other day, I got a PM on Facebook from one of my uncles who basically told me to stop being so lazy and relying on my mom so much.  He told me that I need to do more for myself and be more independent.  My first thought was a big DUH, it's not like I'm not working on it.  Living with kidney disease and failing eyesight isn't exactly easy.  I went into a huge tirade over what he doesn't know and doesn't see, so he has no way to judge what really goes on.  The bad thing is that the whole thing stemmed from a joke I made about wanting a hoverboard, like in Back to the Future, so I could get over the snowbanks, pushing myself along with my cane.