My dialysis center's complaint about IHD.com

[RightSide]

I asked my social worker if I could post the official IHateDialysis.com poster on my dialysis center's bulletin board.  It might attract more of my center's patients to IHD.

http://www.ihatedialysis.com/images/dialysisflyer01.pdf

My social worker refused to allow it.  She said that the name of this website, "IHateDialysis," sounds too negative.  She does not want information about it posted at our center, unless we can come up with a more positive-sounding title for it.

I asked her if she could think of a less negative name for the site.  She couldn't at the moment, but she promised to get back to me on that.

Have any of you encountered any resistance from your own caregivers about the allegedly "negative" name of this forum?

[Desert Dancer]

Oh, absolutely! When I mentioned this site to my clinic they were horrified and thought it was just the most negative thing they ever heard.

My 'Dead Woman Walking' shirt (worn the last day of training) sent them right over the edge. 

[carol1987]

My sisterdoes not care for the name. I have to admit when I knew dialysis was comng and I started researching I hesitated to come here. I was afraid to hear too much negativity because I was trying to get strong and brave about dialysis.  Of course when I realized all of the other sites were run by davita etc..i was concerned about their slant. Once I came here I saw that it was not negative but truthful and extremely suppottive!!!

[carol1987]

Desert dancer...i love your shirt!!! I was going to get one that said'she's not dead yet'  lol

[KICKSTART]

Oh, absolutely! When I mentioned this site to my clinic they were horrified and thought it was just the most negative thing they ever heard.

My 'Dead Woman Walking' shirt (worn the last day of training) sent them right over the edge. 

ROTFLMAO      

[KICKSTART]

Just to add , we are advised NOT to read things on sites like this on the internet , because a lot of it is NOT true !!!!  Yeah right !

[Darthvadar]

Well all I can say is, the name's PERFECT!.... I'm not in KF (yet!), but my darling mum is... I've travelled the KF road with her since May '07, and dialysis road with her since Nov. of that year... Mum's been on both Haemo, and PD...

While I'm thankful for dialysis because it's keeping her alive, I DO hate dialysis with a passion, as does Mum... It's not how any of us would like to end our days, and I'm prepared to wager that not one of us here would wish it on their loved ones... Do you know, if I were to think about it, I probably wouldn't wish it on someone I intensely dislike, let alone someone I love....

I think that the ihatedialysis.com is ideal... And when you look at the title when you visit the site, just under it it says "We're NOT negative, we just hate dialysis"...

This is a very positive site... Information from fellow patients and carers is very useful BECAUSE it's real life, and we don't dress it up in the frilly, marshmallow, happy-clappy manner that the 'professionals' might like us to do.... We are realists... We tell the truth... The good, the bad, and the downright ugly, but negative we are not!....

Keep the title, keep the format, keep the support network going... Most of all Folks... Let's keep the faith in each other... I think most of us hate dialysis (I certainly do with every fibre of my being!), but it's the best we've got at the moment, and without it, I'd have lost my mum years ago!....

Love to all....

Darth....

[paul.karen]

Rightside,

They may not let you post IHD on THERE bulletin board.  But you can still pass the word to fellow patients.  Unless your not aloud to talk to people at your center which i doubt.

Maybe your social worker should educate herself and come take a look at the best dialysis site for patients and caregivers on the internet.  Or ask her how many people she has met that likes dialysis??  Other then ceos of places like Davita and FMC..

[okarol]

When I first saw the name as I searched for internet answers to Jenna's kidney failure, I thought it was a joke or spam site, so it took awhile before I actually visited IHD. What made me come back was Epoman's line "the straight truth from fellow patients."

I think it's a great name though, because people on dialysis get it.

In comparison, if I say "I hate the dentist" everyone gets it. No one says "oh you're being negative," because dental work can be very uncomfortable, sometimes painful. It's necessary, and we do it to stay healthy, but no one I know enjoys dental appointments.

Dialysis is like that. But companies that provide it don't want people to get the wrong idea. 

Rightside, I am pretty sure your social worker has not visited IHD. If she had, she might feel differently.

[cariad]

I don't think I even saw the name of the site when I first visited, I was looking for transplant support groups. The thought that I might end up on dialysis longterm did not really cross my mind initially.

I did not find it negative. I firstly thought it was just for dialysis patients, and second thought that my 'come what may' attitude would not be welcome because the people all seemed very serious to me. In my defense, I did not read very much. I am not sure if the transplant section was even up at that point as it was October of 2006, and I am crap at navigating sites, so I probably got stuck in the general dialysis section and could not find my way out. I did find myself coming back off and on, just to read. I loved the 'ignorant things people have said to me' thread.

Rightside, get a few IHD t-shirts and wear them to dialysis. You can become your own bulletin board. 

[okarol]

Rightside, get a few IHD t-shirts and wear them to dialysis. You can become your own bulletin board. 

I'll buy you one myself!

[carol1987]

That's good karol!!

Rightside  ask the person at the center if she has ever said "i hate the Dentist" !! I know I have!! LOL

[Zach]

I asked her if she could think of a less negative name for the site.  She couldn't at the moment, but she promised to get back to me on that.

How about: 
Dialysis ... mm, mm Good!

[okarol]

 

[carol1987]

That is funny Zach...

[Zach]

And then there's my negative title:
Dialysis ... what is it good for?

[Bajanne]

Zach, I owe you for two good belly laughs this afternoon!!

[MooseMom]

I vote for "DIALYSIS....You know you want it."

[carol1987]

  you guys are so funny!!!

[Desert Dancer]

Apropos to my situation, I'm going to make a shirt that says: "Dialysis: I can do it in my sleep!"

[Dragonette]

or "We All Love Dialysis".

[thegrammalady]

Apropos to my situation, I'm going to make a shirt that says: "Dialysis: I can do it in my sleep!"

   i want one too!!!!!!!!!!!!!! it would be perfect to wear as nocturnal jammies. but then our tech and nurse would get it.

[okarol]

  BWAHAHAHAHA!

[okarol]

Dialysis... Just do it. 

[Meinuk]

I was just looking at a patient meeting flyer from Oklahoma, and I saw a T-shirt that says: 

"There is life... after Dialysis."

http://www.network13.org/patients/KCG_Background.pdf

I want one.