My general rule of thumb, though, is to only give advice when it is specifically requested, or when someone appears to be struggling and is not explicitly asking for help, but might welcome suggestions. Someone who says “this new medication is giving me awful side effects,” for example, is not asking for advice. Someone who says “hey, does anyone have experience with side effects from [medication]?” is asking for advice.

I also have to admit that I tend to take advice from fellow PWDs more gracefully, especially if they share my disability, because I know that they are speaking from experience and a place of personal connection, rather than just taking an opportunity to lecture me. Even if I already know/have tried what they are talking about, I appreciate it because it’s a form of solidarity.

But part of the frustration is not just the advice they give, but the fact that it’s so difficult to turn it down. Otherwise you’ll hurt their feelings and well, they “mean well”. So your concern about your own conditions is then silenced by their feelings on the matter, all for advice you never asked for.

I still struggle with giving that sort of advice. But I’m trying, and I’m doing better at it. At least I hope I am.

So now I just express support and sympathy.
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And awkward. Really? Ten years of mysterious “nerve damage”, and you have a suggestion I haven’t heard of? I no longer try every new drug that “might work”, because of the damage various drugs have done to my body over the years without helping. I like my opiates, and I’m not an addict, thank you. People are always amazed that I don’t want to get off the drugs RITE NAO. If the pain went away, sure, I’d love to be drug-free, but until that glorious (and probably never happening) day, I’ll stick with the one drug that I know works with the least side effects.
.-= attack_laurel´s last blog ..Trigger Warning-type Post =-.

I don’t get the advice that often, as fibro and RA are “invisible” except when I use my cane, but it’s happened, and I’m one of those people who responds to orders/advice by wanting to do the exact opposite.

That’s kind of what I was talking about above. I personally don’t mind advice here and there (although I know others are different than me in that respect), but when it’s presented as an absolute = irritating. Especially then if I say that I have “just” tried whatever they’re talking about and it didn’t work for me and they assume I didn’t do it right or I’m lying. Gee, thanks.

I agree with what you describe about infantilization. I also think there is a component of personal discomfort with vulnerability and mortality. Some people are so uncomfortable with disability or illness, they can’t tolerate the idea that it exists. They have to go all out to eradicate it. That way they don’t have to see it or know it’s around. They want to be the hero who saves me. I’d be happy not to be in pain anymore but honestly, it’s been 20 years and I’m very tired of earnest advice so unless a person has a magic wand they can totally SFTU. Usually I deflect it by saying let’s not talk about medical stuff right now. Other times I explain that I’m tired of advice. What I don’t want to do is then explain to that random person exactly what I have and haven’t tried over the last 20 years! And they always want to know.
.-= Liz´s last blog ..ADAPT in Atlanta kicking ass, taking names =-.