Invasion of Privacy

[mallory]

I could have titled this thread either "Invasion of Privacy" or, "I"m not an idiot, leave me alone."  I was reading some of the other threads, the ones about home visits for PD patients and constipation, to be exact, and I thought I'd start this thread about something that has been bothering me for awhile.

I am a 49 year old, successful woman with a great job.  Since they found out I have ESRD, but especially since I have started dialysis, I have been treated like an untrustworthy 10 year old.

Why do they need to do home visits for PD patients?  I have to go to their clinic once a month for my labs, and to have the little chat with all of them.  Why do they need to come to my home?  I fully understand the need for cleanliness, and, whether they believe it or not, I was clean before I got started dialysis.  And I was clean without anyone checking up on me.

Why do they need to ask you to quantify exactly how often you poop, for heck's sake?  Can't they just say constipation can be a problem, let us know if you have an issue and we'll give you something?  I don't need them to tell me that I have constipation because they counted it up for me, I am fully capable of figuring it out for myself.  And it's not just that, the social worker asks me all these questions that simply have nothing to do with dialysis.

I feel like they think that everything about my life is their business, and I don't agree.  Is it because we qualify for Medicare?  Do they think that gives them the right to invade our privacy?  I'm tired of being treated like they can't trust me to take care of myself.  I'm tired of answering questions that don't have anything to do with my medical condition.  And, while I'm at it, I'm tired of the stupid stickers the dietitian sticks on my labs like "Good Job!" and "Wow, Excellent!"  I haven't been motivated by stickers since I was six years old.

I admit, I am a very private person, and I don't like people to speak down to me.  Does this bother anyone else?  Should I just get used to it?






EDITED: Moved Thread to Proper Topic, Home Dialysis - Sluff, Moderator

[jbeany]

Frustrating, isn't it?  Being sick apparently negates a college degree, and lowers our IQ by about 100 points.  Grrrrrrrrr.   

I've got a reasonable staff to work with, and they still frustrate me at times.  I get a great deal of my info from the web, and if I actually say that, I always get some version of "You don't believe everything you read online, do you?" in a tone of voice that says I'm a total idiot.  Gee, no, not everything - but just because it is on line doesn't make it wrong, either.  And I'm reading medical journals online, not The Enquirer.  Last time I checked, sites like The National Kidney Foundation and AAKP had some pretty reliable info. 

I think I'll count my blessings that my doc gave me a scrip for colace and told me to "self-regulate" the issue.  Thanks, doc, that's all I ever needed or wanted to discuss about it!   

Maybe medicare is part of the issue.  They have to report back to medicare, and if  test results for the unit are bad, they get sanctioned.  That isn't really true of any other medical condition that I can think of, so maybe that's why they are so invasive.

As for getting used to it - no, don't, speak up and object.  All you should have to say to the social worker is "I'm not comfortable discussing that with you."  Or find the thread where we were giving Raina advice on how to avoid talking with her social worker - there was a whole list of things to say to dodge a subject!  Try "Aren't you kind to be so worried about me." or "My, that's a personal question!"

 I've learned to smile sweetly and dissemble with the best of 'em - but then I used to manage a bar, which is excellent training for dealing with unreasonable medical staffers. . .

[goofynina]

But isnt it great that if and when we do have a problem such as "constipation" we can come here and speak about it and get others input,  i just love it!!!  

[Black]

... but then I used to manage a bar, which is excellent training for dealing with unreasonable medical staffers. . .

 

[Nan]

Goofynina.....so does that mean we CAN talk about constipation??!!!  I always thought that was for "old" people who always talked about being regular......have I just gotten older and didn't notice or is it one of those wonderful side effects of dialysis!

[Sluff]

Goofynina.....so does that mean we CAN talk about constipation??!!!  I always thought that was for "old" people who always talked about being regular......have I just gotten older and didn't notice or is it one of those wonderful side effects of dialysis!

No it's just a side effect of not being regular...

[kitkatz]

It is a sign of being irregular, too. One suggestion: Read more Winnie the Pooh!

[goofynina]

I wish we can blame it on being on dialysis but my sister who is in great health has MAJOR problems with constipation and she is very picky about what she eats, ugh, healthy people 

[Ken Shelmerdine]

It is a sign of being irregular, too. One suggestion: Read more Winnie the Pooh!

 

Vistiors to my house often ask why there's teeth marks in the toilet seat!

[Ken Shelmerdine]

I could have titled this thread either "Invasion of Privacy" or, "I"m not an idiot, leave me alone."  I was reading some of the other threads, the ones about home visits for PD patients and constipation, to be exact, and I thought I'd start this thread about something that has been bothering me for awhile.

I am a 49 year old, successful woman with a great job.  Since they found out I have ESRD, but especially since I have started dialysis, I have been treated like an untrustworthy 10 year old.

Why do they need to do home visits for PD patients?  I have to go to their clinic once a month for my labs, and to have the little chat with all of them.  Why do they need to come to my home?  I fully understand the need for cleanliness, and, whether they believe it or not, I was clean before I got started dialysis.  And I was clean without anyone checking up on me.

Why do they need to ask you to quantify exactly how often you poop, for heck's sake?  Can't they just say constipation can be a problem, let us know if you have an issue and we'll give you something?  I don't need them to tell me that I have constipation because they counted it up for me, I am fully capable of figuring it out for myself.  And it's not just that, the social worker asks me all these questions that simply have nothing to do with dialysis.

I feel like they think that everything about my life is their business, and I don't agree.  Is it because we qualify for Medicare?  Do they think that gives them the right to invade our privacy?  I'm tired of being treated like they can't trust me to take care of myself.  I'm tired of answering questions that don't have anything to do with my medical condition.  And, while I'm at it, I'm tired of the stupid stickers the dietitian sticks on my labs like "Good Job!" and "Wow, Excellent!"  I haven't been motivated by stickers since I was six years old.

I admit, I am a very private person, and I don't like people to speak down to me.  Does this bother anyone else?  Should I just get used to it?






EDITED: Moved Thread to Proper Topic, Home Dialysis - Sluff, Moderator

Hi Mallory
I agree to a point especially about the poop conversations but on one hand I think, well they're making it their business to look after me but then sometimes I think what the hell damn business is it of yours (home sister) Fortunately I don't get 'well done' and wow stickers, how dumbed down and patronising is that!? I think I'd really kick off about that. It also sounds like they have to ask these questions to cover their own arses by adopting correct procedure should their company face a compensation claim. In the UK the NHS is paranoid about it. But then as soon as I make statements like this I can't help thinking of some of the medical staff at my clinic who do a fantastic job and really do care in spite of being totally demoralised by the incompetence of NHS management and the way they are treated. When it's these people who ask the questions, then I am prepared to tolerate it.
 

[Chicken Little]

I wasn't thrown by the home visit or constipation questions, the one that has me wondering is on my transplant questionnaire.  The questions is, "Have you ever had an abortion?"  Umm, why?  For the life of me I cannot see how that would matter.   Maybe they are interested in pregnancies terminated for medical reasons, but they need to rephrase it if that's what their after.  I keep visualizing some poor woman who has never told her family/husband about something in her past and is confronted with this during what is already a stressful time.   

[glitter]

I wasn't thrown by the home visit or constipation questions, the one that has me wondering is on my transplant questionnaire.  The questions is, "Have you ever had an abortion?"  Umm, why?  For the life of me I cannot see how that would matter.   Maybe they are interested in pregnancies terminated for medical reasons, but they need to rephrase it if that's what their after.  I keep visualizing some poor woman who has never told her family/husband about something in her past and is confronted with this during what is already a stressful time.   

why would that matter at all?

[jbeany]

Who knows what their logic is?

That one wasn't on my questionnaire, thankfully.

I got "Who do you turn to for emotional support?"  And then a line this long for the answer - _____________________.  What?  Am I supposed to list just one person?  That would be a heck of a burden for that one person to be my sole support.  I had to start scribbling in the margin just to list the friends I've got around here, let alone all of the people I talk to online.  Then I had to wonder if they would figure an online community as an acceptable answer.  Probably not, since I don't see any of you in "real life" and one of the other questions was "Who will be taking you to your follow-up appointments."  Made me wonder if they would keep you off the list if you didn't have a large group of family or friends to help take care of you. . .

[renal30yrs]

I don't see anything terribly wrong about discussing bowel movement.  We are all here because we are not pissing aren't we not?