ThatDamnedPanda
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quote:
ORIGINAL: mistoferin
Anyway, my questions are...if you met someone that you really could see yourself having a successful relationship with, would you turn them away because of an STD? Would it depend on the STD? If so, where would you draw the line?
I'll answer it from the other perspective. As someone with hepatitis C (HCV), I've been rejected many, many times over the years because of it. To the point where it's a major reason I don't even seriously look anymore. Not the only reason, but certainly a major reason.
Sorry, I wish I could give her better news, but it is what it is. It doesn't mean she'll never find anyone, but it does mean things will be more difficult because she's got a smaller pool from which to choose. As you can see in this very thread, there are a lot of people out there who suffer from a lot of misinformation and misunderstanding, and will reject her simply out of ignorance. And, a lot of people who do understand the issue but simply don't want to take the risk - which is perfectly understandable, and i don't blame any of them. But whatever the reasons, it does make it a lot more difficult to find a partner.
quote:
ORIGINAL: mistoferin
Lastly, what the heck can I say to my friend that could help her to feel any better about all of this?
How sick is she? How symptomatic? This matters a great deal in terms of what advice to give her, because people need different things at different stages of the disease. Giving her advice on end-of-life planning does her no good if she's not even symptomatic, whereas giving her advice on diet and exercise is probably bad timing if she's in terminal liver failure.
Having said that - first of all, share with her this piece of advice I got a few days after I was diagnosed. A friend with terminal kidney disease told me, "You're about to find out who your friends are. I know you think you understand what I just said, but trust me, you don't. Yet. But you will, and when you do, don't be afraid to act accordingly. You can't afford not to."
And he was right about everything. I did think I knew what he meant, but - as he said - I did not. However, as time went by, I understood it. And to the extent that I was able to act accordingly, it made a huge difference in my life.
Your friend is going to find out who her friends really are. The friends are the ones who stay, no matter how sick you get. The friends are the ones who genuinely mean it when they say they're there for you, and want to help. People who drift away... well, they weren't friends to begin with, and she's going to need to learn not to mourn the loss of the friendships that never really were. She can't let that bother her, because she can't afford anything that makes her feel less than worthy. She needs to know who her friends really are, and not be afraid to ask them for help. She's going to need it, at some point. And she's going to need to learn how to live with fewer friends, because if she gets sicker, she will have fewer friends. But the ones she has will be friends indeed.
And, you can tell her about me. 12 years ago, when i was finally diagnosed, I was so sick I couldn't climb stairs without assistance. Not because I was too weak physically, but because I was so mentally fatigued from the illness that I could not solve the incredibly complicated problem of remembering which foot to place on which step, and I would fall down. A liver biopsy showed that I was about halfway to the point of complete liver failure, but they could not determine how quickly the diseases was progressing. I had to wait 3 years for another one, because anything quicker than that would not have showed any statistically reliable deviation, but frankly I didn't expect to live long enough to have another.
But I made enormous changes in my life style, mostly relating to a proper diet, plenty of rest, decreasing my exercise to a moderate, sensible level, and most of all learning how to let stress flow past me instead of hit me head on. The biopsy in 2001 showed no discernible progression of the liver damage. The last biopsy, in 2008, showed no progression since the 1998 biopsy, and even some slight improvement.
So it is possible to make changes in your life that will have a significant effect on the disease. The trick is to identify which aspects she can control, and which aspects she can not - and then control the absolute fuck out of everything she actually can control. There should be nothing - nothing - in her life that she's afraid to cut loose if it's holding her back, and no change she's afraid to make if it's what she needs to do. I won't say I live a normal life - hell, I won't even say the life I live is anywhere near the same time zone as the life I'd like to be living - but it's still a good life, and I find a lot of value in it. I'm hiking, biking, canoeing, or rollerblading almost every day, and while I can't do the distances I used to do, I'm out there doing it and enjoying the hell out of it. I had to let go of some things in order to do these things, but the point is, she still has a lot of options, and she needs to learn to look at her life in terms of what's possible, not what isn't. And make her choices accordingly.
I'll also share the other piece of advice my kidney-disease friend gave me a few days after I was diagnosed - "Don't let the highs take you too high, and don't let the lows take you too low." I didn't understand that one at first either, but as i learned what he meant and how to apply it, I found it made an enormous difference. She's going to have days where she gets very good news, and she's going to have days where she gets some pretty damned bleak news. She needs to learn how to stay in between, as much as possible. She should enjoy the highs, by all means - celebrate them, and appreciate them for what they are; but don't let them take her too far up, because it's just too devastating when the bad-news days yank her back to the reality of her disease.
And, by the same token, she can't let herself think the world is coming to an end on the days when she gets bad test results or whatever. Tomorrow's another day, and there'll be more tests next month. She needs to stay as objective as possible, at all times, because she is the one in charge of her disease, and she needs to stay in control. It's a marathon, a process of many, many years, and every stumble is only a brief moment in that process. She needs to stay as close to the middle of the road as possible at all times, and whenever she gets pulled to one side or the other, find a way back to the middle as soon as it feels "right" to her. She can't catastrophize, but at the same time, she can't exaggerate the significance of the good news she gets. She will have many crucial decisions to make as she travels this path, and she needs to keep her condition in perspective in order to make informed decisions.
And the last thing i would tell her is, take advantage of support groups but keep them at arm's length. Support networks of other HCV patients were invaluable when I was first diagnosed, because that was how I found the resources i needed to educate myself. But within a couple of years, I had to separate myself completely from all of them, because in my experience they tend to be dominated by people who are obsessed with how sick they are and how terrible they think everything is. You can't be around that shit for long without having it get inside your head, and your friend can't afford to let that shit inside her head. There's no room for all that negativity if you're trying to live a positive life. She'll need to learn how to listen selectively to the advice she gets from other HCV patients - learn how to recognize what has value, and ignore the "woe is me" whining.
Good luck to your friend, and her friends as well. It's not easy, because she'll have to learn how to live a very different life than the one she's been living and probably expected she always would live. It takes a few years to learn all that, but it is learnable. And the sooner she learns it, the better her life will be.
< Message edited by ThatDamnedPanda -- 5/24/2010 12:11:53 PM >
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RE: Would you close the door on a potential partner bec... - 
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