Am I just weird?

[Deanne]

I grew up with kidney disease and I think in my younger days, I wanted special attention because of it, but as I grew up, I came to hate it when most of my family brings it up. I want to be treated like a normal person, not like a sick person. I turned kidney disease into a topic that was not to be brought up from them years and years ago. It isn't that they're a bad family. I know they care and worry, but I don't want the focus of my life to be on my health in any way, shape or form. I cringed as much for mysef as for my nephew when I learned he was also diagnosed with kidney disease. I figured they'd start to "hound" me again about my own renal status. In some ways, I'd welcome support, but it seems like support becomes pity, or maybe that's just my interpretation, and I'd rather have neither than have pity. I'm dreading the day when my function gets bad enough that they have to know about it and I know that day probably isn't that far off.

[st789]

Is a delicate matter.  Sometimes, it is very hard for my family to understand what I have to deal with.

[Adam_W]

My family is just the opposite. They usually do not bring it up, and sometimes they get upset when I talk about it and they tell me not to bring it up as much. Some of my friends on the other hand seem to only want to talk about it. Now it has dropped to simply "how's dialysis going" or "When do you think you'll be able to get your new access" and things like that. As they learn more about my medical condition, I don't hear "are you still on dialysis" or "if you get a transplant will you still need dialysis" anymore. They also don't bother me about getting a transplant much anymore, because they know that's not in my immediate future.

Adam

[Deanne]

Adam, I think we were switched at birth!

My friends are right. I'm not "normal." I've always known I have a few social issues. I guess this is just another example.

[stauffenberg]

There is a huge percentage of people in the healthy population who take sadistic delight in using what they perceive as the weakness of sick people to condescend to them, police them, manipulate them, treat them as if they are to blame for their condition, and generally act as if the sick are public property to be used for the amusement, cruelty, indulgence, pity, and ego-boosting of everyone healthy.  Families are some of the worst offenders in this regard.  I have often known people who, though they are perfectly polite and respectful in the way they ordinarily treat others, suddenly act like sharks once they scent the 'blood in the water' of finding a sick and thus 'weak' person in their midst.  This behavior is such an ugly feature of people and so common that it is generally better, if at all possible, to hide your medical problems from others in order to protect people from what they can become if given the chance.

[Deanne]

I think you've hit it Stauffenberg. My mom (bless her)  is the controlling type and I've tried to keep from giving her amunition to try to control me. I know she doesn't mean anything badly by it. Her perspective is that she's trying to help me. If I confronted her, she would only feel hurt and wouldn't understand and we'd both just end up feeling bad, so I just protect myself. I remember when I was home visiting during college and she was still trying to tell me what time to go to bed. I know it'll get worse when I start dialysis. I'm glad I live so far away from them and she doesn't like to travel.

[thegrammalady]

I think you've hit it Stauffenberg. My mom (bless her)  is the controlling type and I've tried to keep from giving her amunition to try to control me. I know she doesn't mean anything badly by it. Her perspective is that she's trying to help me. If I confronted her, she would only feel hurt and wouldn't understand and we'd both just end up feeling bad, so I just protect myself. I remember when I was home visiting during college and she was still trying to tell me what time to go to bed. I know it'll get worse when I start dialysis. I'm glad I live so far away from them and she doesn't like to travel.

maybe our mother's are twins.    mine tries but she really doesn't understand and she is just trying to be helpful. but durn-it if i just ask for cereal and coffee for breakfast she isn't being a bad hostess and doesn't need to ask if i want toast, eggs and juice too. (and more than once to boot)

[Deanne]

They *are* twins!!!!!! However, in that case, please check the expiration date on that box of cereal before you dig in. There's a good chance it's the same box you refused to eat from the last time you visited your parents, two years ago. 

[st789]

Put my mom in this list too.

[Sunny]

I know how you feel about others trying to have some say in your health status. I am pre-dialysis and my older sister was matched as a perfect donor. Some of my loved ones feel like they have a say in how I live my life and what kind of treatment I'm undergoing so that I can continue to remain stable and my sister won't have to give me a kidney.