Have you ever felt like this?

[jadey]

I'm one of those patients who found out that I have CKD at stage 5. The year prior to my diagnosis, I've felt unwell (but not aware of it). The toxins were building up, and I was highly anemic... but didn't know. I was nauseous every morning and sometimes even vomited when I gagged too hard.

Throughout this time, I've been told by friends:

"omg I can't believe you're taking the elevator! theres only 2 flight of stairs!! so lazy!!"
-Lazy? probably... but the main reason was that I always felt so short of breath even after 1 flight of stairs because I was so anemic.. but of course I didn't know this and I just accepted that I was probably lazy

I've been told by my family:

"stop gagging. it's all psychological."
"why aren't you eating your food? you feel like vomitting because you're picky"
At the time I didn't know that it were the toxins that made me so nauseous and thus losing my appetite


Have you ever ever felt like letting those people know.. the reason why is because your kidneys are failing? One of my friends told me how much of an asshole he feels after knowing that my anemia is what stops me from taking the stairs.

[MooseMom]

I never had an experience like what you've described.  However, there are often plenty of posts here on IHD from members who are trying to decide whether or not to tell their friends they have CKD/ESRD, and your post makes me believe that it is probably better to tell people as much as you are comfortable in telling so that no one ends up feeling like an asshole.

If you don't give people the opportunity to cut you some slack, then you can expect ignorant comments.

Of course, there are people around who can still be ignorant assholes despite knowing about your situation. 

I personally would be quite furious if my family told me that my vomiting and loss of appetite was somehow my fault, and I will openly admit that once I was armed with a diagnosis that explained my "psychological failings", I would get an inordinate amount of satisfaction, nay, pleasure out of rubbing it in their fat faces.  I would show no mercy.

[jeannea]

For 22 years my family called me lazy and picked on me because I was different and couldn't keep up with them. A few other symptoms that they picked on me for. Then I was diagnosed with ESRD. They still pick on me for my shaky hands. But they cut me more slack now for being tired. Seems like everyone is judgmental. I guess I should be mad. If only I could stop my own judgmental side. But I at least try to only say my judgments in my head not out loud.

[MooseMom]

It's probably a natural instinct to be judgmental, but when you've been on the receiving end, it's easier to control that instinct.

[jadey]

For 22 years my family called me lazy and picked on me because I was different and couldn't keep up with them. A few other symptoms that they picked on me for. Then I was diagnosed with ESRD. They still pick on me for my shaky hands. But they cut me more slack now for being tired. Seems like everyone is judgmental. I guess I should be mad. If only I could stop my own judgmental side. But I at least try to only say my judgments in my head not out loud.

I think it's really sad, the lack of understanding most people have about having a chronic illness. I think when you're young and sick, and you have all your so called "role models" blaming you for your own illness is really traumatizing. That is what happened to my sister before we learned about her kidney failure. To this day I still have nightmares because I too participated in scolding her for not eating back then.

Now I can understand how she mustve felt.. feeling so ill and getting yelled at for it.

jeannea, I'm glad your family is cutting you more slack now. The less people know, the more ignorant they become. I say the solution is to educate them

[Jean]

Personally, I see no point in allowing people to think badly of you because you are not " normal". You are normal, it is just a different normal form theirs. I tell everyone I have CKD. Nothing to be ashamed about, and I did not go out and get it, it is just there. If they dont like it, too bad!!!

[Riki]

I was 12 when I was first diagnosed, and like you, jadey, I knew there was something wrong, I just didn't know what.  My mom did just about anything she could to get me to eat.  I'd eat cold food, like fruit or sandwiches, but when she cooked a meal, I couldn't eat it.  I think she was more scared than annoyed, because I was losing weight rapidly as well.  I didn't mind that.  I had been teased for years because I was a fat, slow kid.  I had been told for so long that when I got older, and started growing, that I'd lose the weight.  Except for the occasional vomiting and weakness, that's what I thought was happening.

My aunt (who is an ex-aunt now) asked me if I was starving myself.  I was only a kid, and I was floored.  Of course, she waited until my parents weren't around to ask me that question.  She wouldn't have asked if my mother had been around.

[SooMK]

Since I'm still pre-dialysis and feel pretty much fine most of the time, I get confused about this. I don't know if I don't feel so hot because I'm old, overdid it at yoga, or if it's my CKD (so many choices). Then I play that tape in my head about "snapping out of it" and stop whining. Since I'm retired I have the luxury of not worrying about the impact of my CKD on my work life but I try to think of it as an educational opportunity. Kidney disease is so common yet it doesn't have the visibility of a lot of other diseases and we can be ambassadors for raising awareness. Every person who learns that maybe someone isn't a spoiled lazy good-for-nothing but someone with a life-threatening illness will probably think before the next time they jump to conclusions.

[bleija]

when i first found out about my kidney failure i was working at the hospital as a transporter, and i was close with almost all my coworkers, but when i started a new job, i told nobody. i ddnt want their pity, i dcdnt want them doing things for me bc of my ckd... my previous coworkers knew what to expect from me and i never gave any less. nobody at my new job knew for several months, but then i got an infection and had to call out... luckily my boss is amazing and yelled at me for not telling her to begin with, but she pretty much tells me take the time i need, dnt come back until im ready. no almost 2 years later, most everybody knowsx my condition, but they know my work ethic too, so i dnt feel like they are pitying me

funny side note tho,i had a coworker named Paula, shes about 60 and very blunt and straitforward, i had started dialysis about 2 or 3 months, and we were talking about patients tht  were in bad health and such, and Paula says once they start that dialysis its all downhill from there, dont take long, i look at her and i go "Paula, reaally?" and shes like well you dnt count, we laughed about it

[Riki]

It's that attitude "once you start dialysis, it's all downhill from there" that makes people so surprised when we mention that we're on dialysis.  That's where the "you don't look sick" comments come from.

When I was about 13, I had someone from the Kidney Foundation come up to me and ask me how I liked being homeschooled.  I just looked at her.  She figured that since I was on dialysis, I couldn't go to school.  I've no idea why she thought that.

[jadey]

Yeah I had so many comments nowadays, after telling someone I have CKD, they go "oh....well..you look fine"

I decided to go back to school shortly after starting dialysis so I can finish my final exams and I get a lot of "what? you're still studying and going to school? if i were you I wouldnt"

I don't think people realize that it's a lifelong disease.. if I quit school now, I quit life already.

I also hate the "hope you feel better soon!"

[MooseMom]

I have people telling me all the time that I look great despite my CKD.  I take that as a real compliment!  What, you want people to tell you that you do, in fact, look like you have kidney failure?

Just because I am sick doesn't mean I want to look like it.

As far as the whole "it's all downhill from here when you start D", to be fair, that's probably true for a lot of dialysis patients who have complicated co-morbidities.  I know that THAT is is prevalent perception of people on D.

Like SooMK, I try to educate people, but I'm old enough not to really care anymore about what my peers think.  My son is mildly autistic, and while he didn't have real behavioural problems when he was young, a lot of his classmates did, and now whenever I see a child act up in public, my first thought is "you know, maybe that child is on the autistic spectrum."  It teaches you to give people the benefit of the doubt. 

What irritates me is the silence.  I would MUCH rather have to deal with some silly comments than have to face peoples' silence on the subject.  If I'm with people who know I am on the transplant list, then they KNOW that I have a pretty serious illness, and I would be hurt if they said NOTHING, not even a "Are you feeling better these days?".  That's a stupid comment, but at least it's an acknowledgment, you know?

[amanda100wilson]

I was working as a nurse in my late teens and early twenties.  For the training we were only had so many sick days before our exams were delayed.  Well, I took the sick days to the max. With various excuses.  I couldn't even explain why I didn't feel well enough to work.  Then I got a staff nurse post and the sick days continued.  One nurse said to me on my return to work after a sick day ' what was wrong with you THIS time?

A couple of years later, I was diagnosed with CKD.  The same nurse was reported to havr said " well that explains it then.'.  Clearly the underlying assumption all that time eas that I was malingering.

Tell them ,ake them feel bad.  They didn't care about what you felt when they made those comments.  You never know; they may learn a little widom and humility

[Poppylicious]

Blokey had a vague idea that he had a problem with his kidneys but stage 5 came along really quickly.  He's been ill for years (you can really tell in our wedding photos) but we didn't know he was ill.  It seems silly now (the weight gain, the paleness, the puffiness, the random [violent] vomiting, the constant need to sleep ...) but we thought he was just 'fat' and had the symptoms to go with it.  When we joined the gym, were eating healthily and he was still displaying all the symptoms we knew something was wrong!  He had very high cholesterol and the doc dealing with that was insistent that he was just 'fat' and I was so angry that he was so upset that I took him to our GP who couldn't understand how the cholesterol doc couldn't tell it was fluid retention.  *sigh*

Anyway, that's by-the-by ... he's quite open about his kidney failure with people he knows well.  I don't think a lot of people at work knew about it until he went for the transplant though.  They probably still don't (despite signing our card and contributing to our fabulous flowers!)

We did have to educate his family quite a bit, particularly his mother.  I still don't think she actually 'gets' it though. 

I decided to go back to school shortly after starting dialysis so I can finish my final exams and I get a lot of "what? you're still studying and going to school? if i were you I wouldnt"

Blokey not only continued working full-time when he began haemoD but he also began a distance learning degree course ... I think he would have found it very hard if he'd had to give up work, not just financially but emotionally too.

[fearless]

I think a lesson to take from this is: nobody should pass judgement on anybody for anything.  You just never know what's going on with somebody do you?  I think if we can believe that just about everybody would choose to be active and helpful, and to work hard and not sleep their life away, then we would always be concerned if it seemed like someone was "lazy" (instead of being critical of them). 

I've also found it very common that when someone passes a particular "judgement" on someone, it is usually the echo of a judgement that was passed on them.

[jadey]

How can I educate my friends and family about kidney disease without leaving the impression of "oh please feel sorry for me?"

I'm always so self conscience that I would come off as whiny, annoying and looking for pity. I really want others to understand the situation I'm in. I'm afraid of telling people "no I really can't lift that heavy box because I have no energy and I'm at risk for a hernia.."

[MooseMom]

How can I educate my friends and family about kidney disease without leaving the impression of "oh please feel sorry for me..."

This is a very good question, and I think it's important to come up with ways to give information.

First, let me ask you...what do you want your friends and family to know?

Imagine that I am your bff.  Tell me about your kidney disease.  Just the facts for now...

[RichardMEL]

Lots of ignorance out there. Some of it is mindboggling.. some of it.. well kind of makes sense from a certain perspective. The worst part is those that don't want to know or refuse to believe. The example Jadey gives about her studying "... I wouldn't do that if I were you" - sums quite a bit of it up for me. That and the "but you look fine!" comments... many people think with MANY medical conditions (and I'll include things like depression here) that just because you "look fine" there's nothing wrong. It's like you need to have a shaved head then they'll understand you have Cancer or something.

As for stairs and being "lazy" - again, lack of understanding. Plus I see people at my work use the elevator to go ONE FLOOR all the time. Now I got up 3 flights of stairs each day at work, and I did it most imes while I was on D, but it was sure harder then - but I'm a "walker" - I do it for exercise as much as not wanting to have to wait for the lift.

I think the core thing is for all of us to try to not let that stuff get to us. So what is some ignorant loser thinks you're lazy? YOU know what the deal is with your condition, lack of energy, shortness of breath, pain, whatever. Frankly it's none of their business anyway. I know, you're a spunky young thing so everyone expects you to be running all over the place, burning the candle at both ends, and so on - because "you look fine" - but we know differently.

I think the worst part of all this stuff is when it is close friends/family - people you know and deal with and are close to(hopefully) that do it. I can forgive some idiot who is just judging on what they see (I am sure many see my fistula and think i'm a drug user - one guy once asked me about the "boils" on my arm.. he must have thought I was a leper or something!). The thing is that if family or close friends choose to not understtand or respect your condition at least to hassle you or judge you without bothering to ask if it's to do with the kidney disease, or  even if they think whatever to keep it to themselves.

Anyway times this kind of thing has come up with me I've either tried to explain/educate, and on the rare times that hasn't worked or been an option just remember that what is important is that *I* know I am doing my best, and that I don't do things "normally"(whatever that is, anyway) for good reasons.

re your question about how do you educate them? yep, very good question and MM's definitely right that the way you'd answer would likely depend on how much you want to share (and how comfortable you are with that).

I suppose generally, in the example of not using the stairs, you could just say "Sometimes doing stuff like that is tiring and I find it hard to breathe so I take the elevator so I can get to where I need to be and get on with it" - it's truthful, but isn't at all crying "woe is me, my life sucks, pity me" etc - I think a calm explanation would be fine and *should* (I'd hope, anyway!) be enough for most people. If they say something like "Oh you poor thing! That must be terrible" I'd just turn it around and say maybe something like "oh it's just one of those little 'features' of my life but I get on with it and it's all good."

or even more generally say - say when someone says "Oh I wouldn't study if I was you" - maybe "Why not? yeah I'm on dialysis, but that helps me do the things I want and need to do in my life - and I want to finish this course so I can contribute more - so here I am!"

For me, I always liked to focus on the positives in my life rather than the negatives... more than once someone has said something like "oh that dialysis sounds so horrible.. why do you put up with it?" and I say "So I can keep the company of lovely ladies, enjoy unsets and my footy team winning!"

I think the only time someone might seem like they want people to feel sorry for them is whining like "Oh I feel so bad I can't walk those steps" or "I hate those needles so much and feeling sick!" (and yes, we all hate them and that) - I think staying positive and showing by example (eg: studying) that you're not letting this stuff get you down and you're still working towards your own goals would show folks by action you're not someone to pity or feel sorry for.

It does annoy me when close family refuse to believe though - that's really disappointing. Luckily I never really encounted that - if anything it was more the other way around - closer to the "I wouldn't be studying if I was you" thing. I'd just say "Why not? I feel pretty good and I can handle it..." of course that can then lead to confusion when you can do some things but not others, but people hae to respect that you have a serious medical condition, and even if you don't "look ill" you are and even if they don't understand why you're not doing something, they should try and support you as much as they can. I'd hope so anyway.

[jadey]

Richard you've definitely hit the spot on some things.

I always tell people I'm fine, I'm doing good. It's hard to let them realize that my "good" day is not equivalent to a good day of a person with working kidneys. As normal as I still am right now, there are certainly a lot of physical things I am unable to do and it sucks when people think you're "better" now and expect you to do certain things.

the person who said "you're still studying?", I just replied with "well if I don't go back to school, I'm just going to sit at home and be depressed. I rather get on with life" it's good because they understood that after but it was still a downer

ignorant rant #2

I've been a teaching assistant for the first year chemistry labs for 3 years now. after I got hospitalized last month for all this kidney failure stuff, I told my boss that I am unable to continue for the rest of the term (until december) but I will return in January. He bumped into me in person thee other day and tried to talk me out of coming back to my job. he kept saying that he doesn't want me to be stressed out and i don't need to work...BUT I know him very well. This guy is extremely selfish and the reason why he doesn't want me to go back is because it is stressful for HIM if I need to call in sick. he doesn't need an employee that has a chronic illness. I could also tell because I tried to tell him what dialysis is and why I need to do it, but he ended up cutting me off to talk about his concerns with me being able to work or not. I kept insisting that I will be able to do and I want to continue my job.. in the end he said okay.

I emailed him my availability the week after and he replied with "are you sure?" I just feel like he really wants to get rid of me. In the end, I said yes and demanded that he give me a shift for next term..

It would really suck if I lose my job due to being sick.

[jadey]

How can I educate my friends and family about kidney disease without leaving the impression of "oh please feel sorry for me..."

This is a very good question, and I think it's important to come up with ways to give information.

First, let me ask you...what do you want your friends and family to know?

Imagine that I am your bff.  Tell me about your kidney disease.  Just the facts for now...

I want people to know what kidney failure does to your body, and how dialysis can keep one with kidney failure alive. I want to let people know that "keeping one alive" is no exaggeration. That is the sole purpose of dialysis. It's not the ideal/normal life healthy people live, it is a completely different life.

I want to let them know that dialysis can keep me going and let me do what I normally do to a certain extent. Most importantly, they need to know that the quality of life for a dialysis patient is highly reduced and so is the life expectancy.

I want people to understand why I will never be feeling "my best" until I get transplanted, how important it is for me to find a living donor.

I've considered writing a bunch of blogs on my facebook account just so my family/friends can have the option of learning more about my condition without me rubbing it into their faces.

[bleija]

facebook blog, never thought about doing that but i think i will, i used to hide my ckd and very few ppl knew about it, but with my recent strain of problems, i needwed to vent and post some very detailed fb posts and confused a lot of ppl, but i think that will give those who are curious an idea into whats going on with me... thx for the idea 

[MooseMom]

I always forget about the FB option because I choose to be in the minority of people on this planet who are not on Facebook.

There are several IHD members who blog on fb about their kidney disease or about their partners' dialysis travails.  Poppylicious blogs about being a 'renal wife"; she's just recently donated to her husband.

I think blogging on FB is an excellent idea.  There you can sort of refine your message for those occasions where you might have to talk to someone in real life, face to face, about your health issues.  FB might be a great place to start.

I do have to say, though, and maybe this is too "old school", that hiding behind a computer screen won't solve the whole problem all the time.  FB is great in that it can be discrete and distant.  You won't "rub it in" anyone's face.  But I don't like the idea that those of us with chronic illness should run and hide so that no one else feels uncomfortable.  There is no shame in what has happened to us.  While it is very thoughtful to be mindful of others' comfort level, you are not wholly responsible for their itty-bitty feewings.  You are not a pariah.

There is nothing wrong with arranging lunch or an outting with a trusted friend or family member and just sitting them down and saying, "You are important to me, and I want to be fair and let you know what is going on with me.  I don't want you to have to wonder or to guess, so I am just going to tell you straight."

People who love you will sit down and listen.  They are not going to understand in the profound way that we here on IHD understand, just as you cannot understand the effects of chemo on someone unless you've gone through it yourself, but while they may not be able to truly understand, they can imagine if you guide them.  Just tell them what you've told us, that you have a kidney disease and it affects you in such-and-such a way.  Tell them that dialysis cleanses your blood and removes extra fluid...that it is a "mechanical kidney" and that while it keeps you alive, it naturally doesn't function as well as a real kidney.  So, the best treatment is a transplant, but even that is not a cure.  Those are all simple, easily digestible facts.

Stepping back, I look at this whole kidney thing with great wonder.  It amazes me to understand what kidneys do.  The idea of being able to transplant a kidney into a recipient is just fantastic.  It's the stuff of sci-fi, yet it happens every day.  What is REALLY amazing is that a poorly HLA matched kidney from a living donor will statistically work longer than a well-matched kidney from a deceased donor.  That's your pitch for a living donor.  When I explain this, I do so in a tone that conveys the miraculousness of the whole thing because I do believe it really is a miracle.

If you don't want people to feel sorry for you, then deliver your message in such a way that won't elicit that response.  If you don't want people to feel awkward and uncomfortable, then deliver your message with confidence.  If they see that you are upset, they will be, too, on your behalf.  If you don't want people to feel confused, be honest with them.  Give them the chance to understand.  If you need to deliver your message from a distance because that is what makes you more comfortable, then use facebook.  But don't hide.

But ultimately, you are not responsible for their reactions nor for their emotions.  You do not have that much power in this world.

[jojosmommy]

A lot of comments on this topic but I would just like to throw my two cents in. Before I began dialysis, most of my coworkers knew I had a kidney problem and I would get the occasional "When do you get a transplant?"  or "I will give you a kidney" (from the most insincere of them all... then I'm stuck needing to sound grateful or something.)     I was VERY anemic before dialysis and felt terrible, but tried my best to hide it at work.  (I have the worlds best assistant who helped me all the time).  Now that I'm on D, I feel great... so I hate it when someone asks me "So... how are you doing?"  with those big sad eyes, like they feel so sorry for me, and I must have one foot in the grave already.  The kicker is they usually ask me as I'm booking it down the hall... looking something like a speed walker, because I'm always in a hurry to get where I'm going.  Do I look like I have one foot in the grave?  I mean come on people! Seriously?  Do I look that bad?  My mom was just as bad.  Her father had a whole bunch of health problems in his last years.  His kidneys finally gave out because of some heart medication that fried them.  He even lasted on D for about 5 years before he died.  But when I got my PKD diagnosis, you would have thought I was half dead already by the way she reacted.  It's taken her several years and just about this whole year after I began D to realize just how promising my life might be.  She had the "down hill from here" opinion as well.  That made it a lot harder for me to deal with it all in the beginning.

I also have to add my thoughts on telling/educating people about your illness.  Just like my co-workers... there are some who will never say anything to your face about it.  Then there are some who will want to "take care of you"  and some who will want to talk about it and try their best to understand without truly being educated about it (because that's really more than they need to know).  Every time I have a new issue or something big going on with my health I try to let my boss know about it.  She always asks  me if I want to let everyone else know or not.  I always say yes, because the more publicly we announce things and let everyone know up front, then less gossip and misinformation goes on behind my back. 

[Poppylicious]

There are several IHD members who blog on fb about their kidney disease or about their partners' dialysis travails.  Poppylicious blogs about being a 'renal wife"; she's just recently donated to her husband.

Oh gosh, I don't blog on FB, MM!  I don't even have a link to my blog on my FB anywhere.  My blog is sort-of a secret, not because I'm ashamed but because I can blog about the terrible things without worrying about the consequences!

Jadey, I think you have to educate people in the way which feels most comfortable to you.  I think MM is right that it's important to actually make the time to sit down with those you love and trust and talk to them about it.  For everybody else, use FB or a blog! 

[Poppylicious]

Oh, and just as an aside ... anonymous blogging is brilliant if you need to vent and just let off steam without encroaching on other people or worrying/upsetting them.  I suppose it's just Old School journal/diary keeping but with the added bonus that somebody else in the same predicament might read it and find it helpful.