I guess support groups just aren't for me. I don't like 'em. Always people sharing how awful their day is and how angry/sad they are, yet they comment on everyone else's story like: "Stay positive! Hope you feel better! God bless!"
A: It's a genetic disease. Your body doesn't do something right. No matter how much you want it to, positive thinking won't fix it. Sorry. Bummer, I know.
B: "Hope" you feel better? You don't actually care. You're just here because you don't want to feel alone and you want someone who knows what you're going through. "Hope" is a stupid, meaningless word.
C: God bless. Yes he is, and instead of trying to get him to take it away from you, maybe he gave it to you so you could actually learn from it. You see all those healthy people running around? He picked you for a reason, pal.
Ugh. Anyway, support groups are nonsense. No one is really there for you, it's just more people with the same illness bringing you down every single day. Worse yet, they just spread whatever nonsense they think is fact, rather than actual facts. It's horrendous! And they always complain how no doctors actually know what's going on with them. They don't even know what's going on with them! I had to tell them about PKD1 and PKD2 mutations! It was NEWS to them!
Anyway...I can understand why they'd want a group. Kinda. Most of them at least have family members with the disease that they can talk to. That's usually how it works, but I don't have anyone. And I think everyone I know is tired of hearing about it. Or whenever I bring it up, I just get told that I'm dealing with it wrong or being negative.
I beg your pardon? I'm a realist/idealist, not a pessimist. (Not) Sorry if I speak plainly of things. It hardly indicates pessimism that I'm not going around ignoring my CHRONIC, GENETIC, SYSTEMIC, PROGRESSIVE, LIFE-THREATENING ILLNESS and saying stupid nonsense like: I have hope for a cure! God bless! Think positive!
What actually helps me is being informed. Sorry. Being informed of all the options, outcomes, and possibilities. And I can't bring it up anymore any way because everyone thinks I'm being stupid for not trying this herb or that product or praying it away.
For the last time: it's genetic. It ain't going anywhere, and that's not negative thinking. But yeah, I'm tired of being told how I should be. When was the last time you were diagnosed with a (see previous list) illness? Never? Funny, then who are you to tell me how to feel?
If you want to know how I really feel, I'm relieved on most accounts. That will probably change the sicker I get (oh yeah, should I be excited about gradually wasting into nothing?), but as of now, I'm still happy they actually found something. I'm not crazy. Then, I'm happy I have at least an inkling of how I could die. That's nice. I'm also happy for all the new insight I've gained. It's weird the things you think about when this sort of thing happens. Finally, I'm glad it's not worse. Have you heard of Cystic Fibrosis? We have a friend who's wife has that and I am ecstatic to have PKD rather than that. Ecstatic.
You know? I mean, HELL no I'm not excited to get big giant kidneys squishing up all my organs making it hard to breathe, eat, and poop. HELL no I'm not excited to look pregnant all the time, sleep all the time, pee all the time, and feel nauseated all the time. HELL no I'm not excited about the possibility of dying from a ruptured aneurysm, congestive heart failure, or aortic dissection. HELL no I'm not excited to get osteoporosis, hyperparathyroidism, increased risk of blood clots, edema, an incredibly restricted diet, and all the other BS that comes with kidney failure! BUT it could be WAY worse. I just wish I had someone to talk to. I wish I wasn't so alone. I wish this new part of me could be shared without fear of judgment, bullying, or pushiness. I want to feel acceptance again.
