The Epiphany

[MooseMom]

Sort of following on from the thread about what we wish family members understood about CKD, tell me about the moment when a family member finally "got" what CKD/ESRF really means to you.  Tell us about their epiphany.

[monrein]

For all my family and friends everything hits home when they come and see me hooked up for dialysis.  I did 5 years the first time, three of which were at home and I had lots of visitors.  The second time I did 10 months in a self care clinic and had visitors there too.  Many people have watched me set up my machine and cannulate myself as I explained exactly what I was doing and why.  I'm also really into food and cooking and dining out so the contrast between D and transplant shows up there big time too.  I usually explain why I can't have one thing or another and people quickly understand what a balancing act the whole diet/exercise/dialysis thing is.  I don't moan or complain but I do try to educate at every opportunity I can and my friends and family are very aware as well as supportive.
On home dialysis I used to have people over for dinner...I did 5 hours at a time back then and so I'd cook a big meal, hook myself up and we'd eat.  Some people were squeamish at first but they all got very used to it and the time went quickly for me.  I taught university french at the time and did some private tutoring sometimes during the first two hours (lost my concentration after that).  Those few students asked a ton of questions and told others about what kidney disease really meant. 

I've always been a high energy person so my family and friends have never viewed me as "lazy", just ill.

[MooseMom]

I do think it's helpful to view things as "educational opportunities".  If you are an open sort of person, this isn't too hard.  But one thing I have learned from IHD is that there are a lot of CKD/dialysis patients who either don't know how, don't feel like or don't want to explain things to people. It's an extra burden.  Or they may feel like it's an invasion of privacy.  I personally am happy to yabber away if anyone has a question or is trying to understand why I won't eat a chocolate sundae, but not everyone is like that.