Posted by Racer on May 8, 2004, at 14:48:06
In reply to Re: Not what else..., posted by SLS on May 8, 2004, at 14:10:49
>
> What do you need from people right now in order to help you get through this difficult time?
>You know, apparently I want too much -- but I really think that feeling as if anyone on my "service team" actually listened to me would help. Having my hand held through the adjustment period with drugs. Feeling as if the doctor gave a damn about helping me. Seeing consistency between their saying -- ad nauseum -- that they care and their actions that show they don't, that they're so overwhelmed that I just slip through the cracks. Mostly, though, listening and being heard and having support.
Here's one for you: if I have a problem with meds between visits, I have no place to turn. Nope, the doctor won't talk to me, even over the telephone. What gets back to me via the clerk doesn't usually have a whole lot in common with what I'm calling about, so that kinda destroys my trust. And here's the kicker: I have a hard time speaking up for myself anyway, so they have an easy time making me believe that I'm at fault. You know, "Oh, well, you're so hypervigilant about side effects..." "Who me? No, I never said that to anyone, they must have misunderstood something in your chart..." (that last is the doctor, when I tried to bring this up to him.)
And because they're all part of the same agency, I really feel unsupported all the way around, as if I have no one I can turn to for help. Any time I try to tell someone there how I'm feeling, they tell me again how much they care and how much they're doing for me and how it's my fault I'm not responding. Whew... Aren't you sorry now you asked? Want more? I got more, trust me...
So, in general, being listened to would be a good first step...
> For now, the only things I can think of to offer you is friendship, respect, warm feelings, and a listening ear.
>
>
> - ScottScott,
You are doing more than you probably can see. Writing that did help get some of it out of my system. Seeing that it's really the patient centered part of care that's missing helped -- I mean, they keep saying that I'm asking too much, but maybe they're just offering too little? Or offering only one side of the treatment they're supposed to be providing? Just the fact that you heard me helps. Just the fact that you post to me helps. Just the fact that I think you probably understand this all the way into your bones helps.
So, you help.
Damn, if it's that easy, why can't anyone at this agency do it?
poster:Racer
thread:344533
URL: http://www.dr-bob.org/babble/2000/20040501/msgs/344828.html