Guilty!

[JRiggs]

I'm Stage 5 CKD. Does anyone else deal with guilt regarding your CKD? Almost like its your fault and you have done your body wrong? You have done your family wrong? All my life I have unjustly associated sickness with weakness. I feel that I am now that week link. Therefore I have an issue announcing to friends that I have CKD. They know something is wrong but I insist that I am fine. I REALLY have a problem asking someone I know to donate a kidney to me. I'm trying my best to do the right things. Am I alone in this thought process?

[jdapja]

I understand your situation. Don't feel guilty. I have known people with stage 5 that have come back and were stage 4 and even 3 after getting on the stick, so to speak. You have to follow your doctor's advice (I hope it is a neurologist) and you have to do "things" on your own to get yourself in shape. Speaking with a psychologist would be a good idea to point you on the positive stream. I have been and still see a psychologist and it helps quite a bit. You can let out all your feelings in confidence and hopefully get "back on track." Good Luck and let us know how you are doing.

[Nutbrownhare]

To be ill is not a weakness, infact you are showing great strength dealing with your CKD. Unfortunately it is society as general that has this attitude that if you are old are ill you are not contributing to society, but that is so wrong. We all have so much to offer. Try to focus on the positives in your life.

Be honest to yourself and your friends, you have an illness, you are dealing with it in your way. Sometimes you may need support, but we all do. And you don't need to ask your friends to donate, you may find that they may offer when they find out, they may not offer (it is a big undertaking), but just be you that they obviously like.

I agree some counselling would probably help too. Take care and focus on the good things in your life.

[worldnurse1]

I'm stage 4 CKD. The problem I find is when close family attack me for supposed laziness or weakness, which actually is fatigue due to kidney problems. This is very depressing. You have to find others and forums to give you supportive positive feedback (such as this online community), and educate your loved ones.

[cmaxwell78 NKF Ambassador]

You came to the right place! I hope you will start to find ways to release your guilt. You certainly didn't choose this path for your life. For whatever reason, we all have this thing in common and, while we all have things we're really good at and don't need the assistance of others with, our health is one of those things we need people to partner with us on. I think you'll find that being honest about your health struggles is the exact opposite of weakness - it's tremendous strength! And we have strength in numbers here, so always come here if you need support or to bounce some ideas off others that are right there with you!

[worldnurse1]

Thank you very much cmaxwell78 for your supportive comments.

[JenN18]

JRiggs, you're not alone! I was the primary caretaker in my family (while dealing with undiagnosed lupus!) for years. I had to suck it up to care for various family members. Now, I'm in ESRD and on the transplant list, and I need help myself. When housework and yard work became too strenuous, I hired help. I just went down to part time this week. I HATE needing so much help. In the past I never received it, so I stopped asking. I'm more of an "I do it myself" type, but things are different now. I'm surrounded by people that love and respect me. What a difference it makes!

I felt guilty, getting married and adopting kids when I knew kidney issues might progress to the point of needing a new kidney. My husband knew before our wedding and still wanted to get married. He has been my rock. It sucks to have small kids and not be able to be the kind of mother I want to be all the time, but I'm trying to model a positive (if somewhat altered ) life for my kids. I want them to see illness is not necessarily a death sentence, and there are many ways of "being."

My husband started a Facebook page for me when I first got really sick, to get the word out about needing a kidney. I've been gobsmacked by all the love and support I've gotten from it.

Share your story. When I started sharing, several people in a similar boat came forward to share theirs. I believe we are stronger together.

Stay strong, keep your head up, and let people know! You don't have to go it alone.

[Hidden]

Okay, stop reading my mind. Boy, do I have a problem with what I did over my lifetime that has brought on the CKD. I deal with the guilt internally every day but I try not to let it show on the outside. To be honest, I haven't told any family or friends yet about it but I'm sure some know something is happening because of my non-committal answers to..."How are you doing?" or "How are you feeling?"

When I think that I rationalize it by saying that "How was I to know?" I don't remember seeing commercials or signs of what to look for. I'm slowly learning to deal with it but there are times when I'm waiting to fall asleep or when I've just woken up but still lingering in bed when I get the guilty feelings.

When I feel better about it and my options I'll probably let others know. Right now, what happens in my doctors' office, stays in my doctor's office.

[jobeth]

With polycystic kidney disease, we are pretty much born with it, and it is a matter of waiting until the cysts take over our kidneys. I have half-heartedly tried some diet programs over the years, and have been able to lose weight with them, and had my levels improve slightly, but it took until I got to stage 5 that I really had the will-power to find something and pretty much stick with it. I haven't been on my program long enough to know how it is working, but I will start getting tested, and then adjust eating accordingly. If I had really changed my eating habits when I was in stage 3, I would have a a real chance of at least keeping things at stage 3. I don't feel guilty, as I did make the choice to allow the eating habits of others to dictate what I ate. I am a little frustrated with myself that I didn't make myself determined to change my eating habits a long time ago and stay with it. Will let you know how I do on my tests.

[horsie63]

Not exactly guilty but I do know this is self inflicted. I have never been overweight and could eat anything I wanted which included a lot of fast food, salty stuff, and ignoring my BP as I considered it to be "white coat" but alas it was not. I'm in stage 4 with an eGFR of 22 and trying to maintain that at least.