What do you say ?

[KICKSTART]

Leading on from another post i made, it seems like a lot of us have to deal with our illness not being taken to seriously. I for one know if i say to someone ..i have kidney failure the general response is.. oh yeah, but you just need to get a transplant sorted then you wil be ok. If someone has cancer then its all understood, people understand how serious it is , but people dont seem to think that what is wrong with us is any big deal (well most). So if you want to get the point across about just how ill and how serious it is , what do you say ? (without saying kidney failure) do you for instance say ..chronic illness?

[Chicken Little]

I stopped discussing my health with people a long time ago and leave it at, "I'm doing fine" now.  I've actually had the opposite reactions as you though.  When I do tell people I'm on dialysis they hug me and start to cry.  It's me that has to say I'm hopeful that a transplant will improve my health, and soon.   

[KICKSTART]

Yeah i 'm not really talking about discussing your health in general with just  anybody , but those times when you need to get across the seriousness of your illness.

[Joe Paul]

I just say that I have an illness for which there are only treatments, no cure.

[lola]

I love when everybody say's "well at least he can go on dialysis" Like that's so great!!!

[RichardMEL]

This is a tough one really. I think you have to pick your mark... as in it depends who'a asking, how well you know them and so on. Some people I will just say something like "I'm ok" - if they know I'm on dialysis I might say "yeah it sucks but that's what I've got for now"... but others you can explain further.

I think the thing is that yes - Cancer (for example) is very well understood in the general population, but something like kidney failure isn't. A lot of people don't understand what dialysis is or entails.. and why would you need to if it's not part of your life or someone you know? Hell the first time I heard of it was in a Star Trek movie in the 80's.... and I remember thinking "what's so horrible about this dialysis thing?" - little should I know that 20 years later I'd have first hand experience!

Sometimes my workmates ask me about how it goes... and they know a little bit since when it comes to work lunches or going out I sometimes have to explain why I'm only having a small glass of water or something... and usually I just joke a bit like "Off to have some bad sandwiches!" and so on. I think they have some idea, but not really... If someone asks for more detail I'll tell them, but I don't make a habit of it. I might say stuff in context... like the other day I was listening to my football team play while on the machine and how things were tight in the game and the nurse decided to take a BP reading and wondered why it was so high... so I made a joke of it - "Well what do you expect at such a tight part of the game? I was excited, nervous and stressed.. and the nurse didn't understand!"

In general I try to NOT focus on it or mention it a lot... for one I don't want to sound like a pity party or that it is the only thing in my life or anything.... and I have even been abused once or twice by so-called friends for "going on and on" about things like my fluid restrictions and stuff... when I do try not to...

The other thing is I feel a lot of people don't like to be confronted by such things.. so I'm hardly going to say "Look, this thing could kill me sometime... and a transplant would be great but it's NOT a cure, and there are no guarantees" and so on.. it might be accurate but it's also quite negative and people don't like that... sometimes it's easier to say "I'm fine"

[MyssAnne]

I've gotten both responses. As RicharMel says, pick your answer according to whom you speak. Some people
really care, others just want juicy gossip to tell others. One thing about this, I've been more assertive,
about what I say and what I do not say to others. If I don't want you to know, I'm not gonna tell you.
Another thing I've noticed. Sometimes you get perks. Special treatment. Hey. If they wanna fall all over
you offering you something, take it. If I'm feeling really bad, I'll take it. If I feel fine, I don't worry about it.
Guess I'm saying, be realistic, and use it as an ace if necessary.

[KICKSTART]

Ok let me narrow it down a bit , talking to friends and work folk etc is not really what i was aiming at ..sorry if i didnt make it clear. Supose you needed something and had to deal with an official , i will try and give you an example ..someone for whatever reason official contacted you to see why you didnt work ..your reply .."I have kidney failure /i am on dialysis " their reply ,but why does that stop you from working, without going into a clinical details about your condition , would you say .. I have a chronic illness , i am seriously ill, i receive life sustaining treatment without which i would die ? Its just that sometimes people no matter how you explain kidney failure to them just dont get how serious it is!

[goofynina]

As for me, i tell them i am disabled, and if they ask me anything further, i just tell them i depend on a machine to live, they pretty much dont ask me too much after that 

[Adam_W]

When people ask about my situation, I give them as much detail as they want to know. I want people to know exactly what we're going through, and I don't spare the gory details. Take care.

Adam

[boxman55]

I have a friend that sometimes sees me right after dialysis and he will ask me the same thing every time. "so how was dialysis..Mark" I answer the same way every time. " It sucks..Dave" Other friends have commented that Dave is worried that I am very negative lately. Do I instead sit him down and explain the whole dialysis trip.. I really think not. I don't think most people want to hear it. They seem to be like on pins and needles hoping you don't bring up the "D" word. I prefer when you run into someone or your hanging out that the conversation stays away from my disability...Boxman55

[kitkatz]

If hubby asks me one more time How did it go? After dialysis I am going to blow a gasket at him. How does he think it went? If I am still walking and talking it went good. If I am crying and yelling it went bad.

[glitter]

I ask my husband too 'how did it go?'    I just wanna know if it was rough so I can try to anticipate his mood/needs........I am not trying to be a pest...

My husband tells it all when people ask-probably alot more then they want to hear- but until HE realizes that i am shutting up.

[jbeany]

Hmmm. . .  if dialysis went well, at best it is simply annoying and boring.  If it was exciting - well, exciting days at the dialysis unit are never good ones. . .

[Duane]

Sometimes I just say, I'm on life support 3 times a week, or my bodies main filtering system doesn't work like yours so i go in to have an oil change 3 times a week.

Where's my handicap sticker?

[boxman55]

Hmmm. . . if dialysis went well, at best it is simply annoying and boring. If it was exciting - well, exciting days at the dialysis unit are never good ones. . .

Amen Jbeany, so true so true...........Boxman55

[st789]

I agree with it because when you disclosed too many detail, they see us as very negative.  Thus sometimes it would be better to just say I am fine and smile.  Even your own family members do not want us to rant about it.

[RichardMEL]

Trying to focus on KICKSTART's question about "officials" - gee this is a tricky one. I am very upfront though.. for example I have always told my employers where I am at for the past 5 or so years... first it was "I have this condition and I will have to start dialysis sometime soon, but I am not sure yet and will give you as much notice as I can" and then "OK I have to start this thing so will have to change my work hours" and luckily they have always been good and supportive. From my point of view I have wanted to be upfront because, if you were an employer/boss, would you like a "surprise" from your worker telling you "Sorry but from next week I can only work 3 days a week because I have to do dialysis on the other days" or so on... At least the way I have done it they have known well in advance it could happen and could anticipate.

I don't see that as anything but being honest and treating people the way I would want to be treated... rather than trying to get sympathy or anything like that.

If someone not previously informed asked... and perhaps KICKSTART might be talking about social security or similar workers??? I'm not sure... but well yes I would explain that I couldn't do X because I had to be at the hospital unit for dialysis (or whatever the cause may be). I think in these situations it is best to be honest... not over the top.. but just honest in where you are at and what you can and can't do. If it seems like they don't believe you then I'd just give the neph's name and contact number. I haven't been in that situation myself though so am not sure.

Someone wrote above that it was good to use your condition to get an advantage... (sorry if my paraphrasing is incorrect)... I slightly disagree with this (I know you wrote only if you're feeling crappy)... I'm not really out to get charity because of my condition or to have people say "oh you poor thing what can I do for you?" (exception: a cute woman... )... I think unless I felt close to death, in which case I might ask to be helped to hospital or for an ambulence or something... I'd just let it go. Everyone has struggles in their lives of one kind or another. I don't really think I am special or deserve special treatment because I have kidney failure.

Just my 2 cents anyway.