Telling Extended Family

[Restorer]

Thanksgiving is tomorrow, and this is my first Thanksgiving on (peritoneal) dialysis. The year before, I knew about my kidney failure, but I was predialysis.

On Saturday, I'll be celebrating Thanksgiving at my father's house, and my grandfather and grandmother will be there. They don't yet know about my kidney problems. Last year there wasn't any need to tell them, and my day-to-day activities weren't any different, so it was easy to hide. This year, I have to do exchanges during the day, and that won't be easy to hide. Although they'll only be there during one of my exchanges, they'd notice me heating up my bag of solution, or spending 30 minutes hidden away.

I don't really want to tell them, at least not now, because it would just lead to questioning that I find frustrating with family. But these aren't really the kind of people who would look up information on their own (my grandmother refuses to ever buy a computer), so I know I'd have to repeatedly explain things until they got it, and I'm already tired of that. And I don't want them feeling sorry for me or openly concerned, because I'm fine right now and aside from the exchanges, they couldn't tell the difference.

Mostly a rant, because I don't know what to do, but anyone have any suggestions?

[Wallyz]

I don't know what to say, other than educating people is just part of the whole crappy package.

I guess just play it cool, and if everybody gets curious, have  a 10 minute presentation about it, and then say "Now, its thanksgiving, I want to spend it with you, so other questions can wait until next week on the phone.


Then screen your calls.

[florida.flyer]

I didn't tell my neice for a year...(she'll be 33 in december) I knew she'd freak out, and, yep, she did. she lost her Dad when she was 6 years old and she is very attached to me.  so I just waited till she stopped yelling, and then said calmly "I"m doing ok, I'm not dying. it's just a different kind of schedule."   there really isn't a great way to tell loved ones, but you'll get thru it.  good luck!

[cherpep]

Can you ask another member of the family to tell them?  Perhaps they can also tell them you're not comfortable talking about it yet, but you thought they should know.

[okarol]

I told anyone who would listen about Jenna. That's just me though. And it was ok with her, most of the time. It did lead to offers of a kidney by friends and family. I know it's tough to answer all the questions, but once it's out I would hope you'd get some loving support from your family. But you should do what makes you feel at ease. I agree, having a family member inform them, maybe after Thanksgiving if that's better for you. They could refer them to kidney school to learn more. www.kidneyschool.org, or print out a one page info sheet for grandma. Good luck and I hope you have a happy Turkey Day!

[thegrammalady]

i didn't have to face the problem my kids and i are the only family living in colorado. by the time i made it back to oregon after diagnosis my mother had told everyone.  but i'm with karol. give me the tinest of openings and i'll yap for hours about dialysis, kidney disease and transplants. but then i've always had a big mouth. my uncle is the only one who really questions anything, and his view point is usually off track. but then his main aim in life is to stir up as much trouble as possible. i just wish he would leave my mother out of it.  good luck with however and whenever you tell them. they love you, it will be all right.

[Restorer]

It would be much easier if I knew what had caused my kidneys to fail. I'd like to just be able to say, "I was in a car accident and it destroyed my kidneys, so now I need dialysis," or "It's an autoimmune disease, my body's attacking my kidneys, and now they don't work, so I need dialysis." But all I can say is, "I found out last year that my kidneys weren't working, and no one knows the cause," and then I always, repeatedly get people asking things like, "Well, what did they do to try to find out?" and then I have to go into my surgical/hospital history. It's just a long process that requires more explaining to the layperson than I wish I had to do.

I might have my father break the news, and then try and field whatever questions come up. I guess I don't see much other option.

[Wallyz]

Tell them you were diagnosed with Indeterminate Nephritic Hypostatic Failure.  Very rare.

[cosmickelly]

Restorer,
When I read your post it makes me sad.  Why sad, you may ask?? Because you have people that care enough to ask questions and care for how you're doing. You also have the opportunity to educate and assure. 

My in-laws are older and have the same resistance to computers and the internet, but they care enough to ask how I am doing every single day. When medical things pop-up (as they often do) they always want to know what's going on and am I going to be alright.  I'm always grateful for their concern and don't mind the minute or two it takes to explain the latest procedure to them.

Ironically, my own family (I'm the eldest of 5 children.  My siblings are 36, 30, 23, 20.) with the possible exception of my step-mother (because she's a dietitian in a hospital with a dialysis ward) has no clue about renal failure or dialysis.  And, more most importantly they don't give a plug nickel.  They never ask and plan family events when I'm on the machine.  It's not intentional, I know. But, ask any of my siblings when my dialysis days are....  After they say, "Dialysis....what??" I'll bet you money they won't know.   

I said all of this to say, There may be many out there that would be thankful this Thanksgiving to be in your "predicament."

Happy Thanksgiving!!

CosmicKelly 

[Sluff]

I can understand your feelings in this matter Restorer but I think the sooner you tell them and get it over with the better you will feel. They love you and will be concerned, that is just part of having a loving family, you may see this as a curse but it is more of a blessing. I hope you see things different after the holidays, it is your right to only talk about what you are comfortable with.

[Lori1851]

Restorer,
I know how it is to be asked alot of questions. My son had FSGS and ppl would constantly ask why he was so "white". At times I did not want to talk but I started educating myself more and I then became more comfortable explaining things. I know one time my bro-in-law said "so when is teh transplant? I said are you volunteering to be tested! I told everyone that asked about kidney disease. I felt maybe I could get someone to be checked if they had never been. My parents don't own a puter either. I did alot of repeating but they finally got it and even seen Dustin dialysis and I would explain what the machine was doing. I for myself would be hurt if I found out later someone was sick and could possibly need my help and I didn't know.
Just food for thought;)

Lori/Indiana

[Restorer]

You're all right, of course. I'm lucky to have family that's willing to learn and that care enough to make sure I'm okay. I know I would be much more frustrated if my closer family didn't take into account my dietary restrictions. The thing that frustrates me most with this situation is just the timing. I only see my grandparents on special occasions, and getting into the details of all my kidney problems and dialysis would ruin the festive mood, both for me and them. The way I see it, it doesn't help me if they're worrying about me, because there's nothing they can do most of the time, and worrying certainly doesn't help them.

It's the whole idea of being treated differently because I'm "sick" - not even acutely most of the time, just that I'm branded with that label because I've told someone that my kidneys aren't working. Those times that I actually am feeling bad, I'm grateful that it's taken into account, but... I don't know, I can't think of a solution. It's all in my head, all in my personality and my relationship with my family. I don't like to be treated differently, and I don't like people worrying about me.

I thought about just deleting all of the above, but I think it does me a little good to express it, even if I never really got to a point. Don't think that I'm complaining about my situation, I'm just frustrated at not having an easier way out.

How about handling the initial questions like, "How long do you have to be on dialysis?" A straightforward answer like, "For the rest of my life," is a little too hard-hitting for caring family, in my opinion. Then there's, "Until I get a transplant," which, for me, leads to a harder series of questions to answer. (I haven't yet had any transplant-related appointments, and the one offer of a kidney from my mother is on hold as she just had surgery.)

I'm going to look around the forums for examples of what people have said to explain things, and then maybe I'll post here again with the answers I'm considering. I feel like I need to do that because I'm not good in social situations. I can communicate much better in a slower, well-thought-out form like writing (and I know where this is going to lead...), so I feel like I need to prepare a list of answers if I'm going to keep from stumbling over words when I explain things.

[monrein]

When I'm asked how long I have to be on dialysis, I tell the truth.  "Until I get a transplant or die, whichever comes first".  I don't say it jokingly or scarily or heart-wrenchingly.  I say it matter-of-factly.  And when they exclaim "Oh no", we have an opportunity to educate people about ESRD. 

I hate people worrying about me too.  I want to be independent, strong, always cheerful and fun, I want to work hard, etc etc but the truth is I can't always get what I want.  Oh man, that really should be the title of a rock song.

I explain that I have good moments and low moments but that all in all I'm glad to be around and then I ask how they're doing...how are their kids, work etc...and try to get back to what regular people talk about when socializing.  I want people to be aware of what we and others must endure, without ruining a party, a day or a mood.  Like so many things, it's a balancing act.  A serious moment followed by a joke...even a dialysis joke that I have to explain. 

[jbeany]

Okay, I think we're on two different trains of thought here.  There the track of "explain in detail - it helps get the message out to the general public, and helps our friends and family understand what we are dealing with." 

Then there's the track I'm always on with my own grandmother - stop confusing her with details she doesn't understand, and will never comprehend.  I love her, she loves me, but she doesn't understand anything more than the vague idea that I'm kind of sick.  (To be fair, she's also 91, with only an 8th grade education, and doesn't get a lot things. . .)

Restorer, can you just offer the simplest explanation possible?  Try "I'm having some medical issues with my kidneys, and this is part of my treatment.  I'll be done in half an hour."   If they ask, just say it's time consuming and kind of boring (which is true!). 

I'm all for offering explanations when they will do some good and help people learn - but that's not always the case.

[TynyWonder]

Restorer,

You stated that you wished you could tell them at least a reason for your kidney failure..........well, have they not done a biopsy on you?   I don't know the reason for my kidney failure either and they did do a biopsy on me and it just back "inconclusive" and that is exactly what I tell people when they ask I don't know...........the biopsy said, "inconclusive". 

[Sunny]

This is a difficult issue and I feel for you regarding how to go about it.
I made sure I told a few of the family gossips and they spread the word. It made it a little easier next time I attended family get-togethers.
Gossips can sometimes come in handy.

[Restorer]

You stated that you wished you could tell them at least a reason for your kidney failure..........well, have they not done a biopsy on you?   I don't know the reason for my kidney failure either and they did do a biopsy on me and it just back "inconclusive" and that is exactly what I tell people when they ask I don't know...........the biopsy said, "inconclusive". 

Exactly.

But all I can say is, "I found out last year that my kidneys weren't working, and no one knows the cause," and then I always, repeatedly get people asking things like, "Well, what did they do to try to find out?" and then I have to go into my surgical/hospital history. It's just a long process that requires more explaining to the layperson than I wish I had to do.

It tends to go something like this:

Me: "I found out last year that my kidneys weren't working."
Them: "They just stopped working? What made them stop working?"
Me: "I don't know. The doctors checked everything they could, but all the tests were inconclusive."
Them: "Did they do a biopsy?"
Me:  "Yeah, they did some scans, and blood tests, and four different biopsies. None of them showed anything that told them what caused it."
Them: "Is there anything else they can do?"
Me: "Nope. They've already poked me with needles all over and cut me open. They looked directly at one of the masses and couldn't find a cause."
Them: "Wait, masses?"

And so on. And that's usually the least of it. Sometimes they keep asking, trying to figure out what could have been missed. I don't know if they ("they" being whoever I'm telling at the time) think that I haven't fully considered past possibilities, or that I haven't pursued diagnosis with my doctors, or what. But sometimes they pry, and it's terribly frustrating to be polite and answer their questions, while not wanting to explain everything in detail over and over. And I have to choose my words carefully. "Tumor" is also a correct word for what I have in my kidneys, but if I use that word they start asking questions about cancer.

On forms, or when talking to people I'm sure are well-informed in the medical field, I use the official diagnosis: "interstitial nephritis of unknown etiology/origin."

[Sunny]

I run in to this issue too.
They always want to know how I got Goodpasture's Disease. Well, I don't know and neither do the doctors after much testing. People often follow up with nutty questions as if they think maybe they can help me figure out where it came from unlike all of those very knowledgable and learned doctors. They are trying to be helpful I know, but it is tedious. Some will even give me suggestions on how to cure it. Wait till you run into that whole topic. I have had people tell me about: homeopathy, magnetic matress pads, yoga, vitamin supplaments, Raikia,and the list goes on.

[okarol]

Sunny, my husband gets the same "help" when people learn he has struggled with chronic back pain (after 3 surgeries) and he gets all kinds of suggestions: copper bracelet, accupressure, magnets, touch therapy, meditation, biofeedback, electronic stimulation, cortisone injections, implanted devices, etc. He's tried all of them (within reason), but people still try to explore why he just doesn't find a cure.

[boxman55]

Cronic back pain has to be the worst. And there is no way to fix it once it goes south...Boxman