Stress and HIV Agencies

[MarkintheDark]

This is something I've experienced often enough with HIV agencies, I might as well vent.

I've found most agencies and their employees simply have no concept of how seriously stress can affect those with compromised immune systems.  In my history, for example, I've even had one tell me, "If you don't like it here, go somewhere else."  When I was in serious pain and a case manager didn't call me back as promised, he yelled at me a day later about his case load.  I left both agencies.

I recently had a problem with an agency that couldn't honor the appointment time (it happens) and an incompetent nurse who, after three tries, couldn't manage a simple BP.  I walked out rather than make a scene.  Over the course of ten days I then tried to contact someone, anyone to address it.  A minor matter as it was simply for my doc's clearance on a procedure.  Not a single response to voicemail, text, email.

I hated having to do this - this is not who I am - but leaving an expletive-laden voicemail finally got a response.  The cynic in me still remains skeptical my concerns will be addressed.

The gist of this is that HIV agencies so often aren't even remotely cognizant about how stress affects those with compromised immune systems.  At least that's my impression.  It's like some vague classroom concept to them.  Particularly as an LTS, I'm living proof that stress - a couple of events over which I had no control - can put people like me in the hospital.

In particular I'm still haunted by the memory of a friend who went into rapid decline (and died) nearly 30 years ago as his frustration and stress increased.  He's largely the reason I've jettisoned as many stressors as I can, stressors a lot of "normal" people may take in stride, but that I feel are something I can't afford...and I'm still here.

Do agencies like AHF even address this in their training?

[harleymc]

So you walk out because someone is having trouble taking your blood pressure and then start a 10 day campaign about it.

If you call that not making a scene you need a reality check.

leaving an expletive-laden voicemail ?

What gives with you trying to  cause distress to workers? your self described behaviour is beyond the pale.

[hippo1010]

Hello. I have had my share of incompetent case managers, insensitive medical staff, and downright asshole pharmacists. Yes, they are there, and yes, you must be selective when going for treatment. It's a sad reality that we have to deal with.

And yes, there are some places that only pay attention to you when you snap, as that's what they are convinced that we are, as if it's supposed to be expected from us. In my experience, that is typical of agencies that work the most underserved communities, used to deal with "less than ideal grateful clients", and I guess, get used to that kind of people to the point that they don't even respond when they get people with actual manners.

I was once accused of lying about drug use. I've never used drugs in my entire life, and I had some case manager who kept inquiring and not letting go. She insisted in having a "recovery plan" for me from substances that I didn't even know exists. Then she was "offended" when I ripped the pages off.

I know one or two things about unprofessional behaviors and poor attitudes from people who are supposed to deliver services to us, both as a client and by having worked in several agencies with programs for people living with HIV. I had a few coworkers who I'd never recommend for anything service-related, leave alone helping people with HIV. I perfectly understand where you come from.

Yes, there are incompetent jerks out there in an industry that requires a lot of patience, professional behavior and sensitivity, but the opposite is true too. There are well-trained, very dedicated professionals who are wonderful at the work that they do. What we need to do is (a) find the right agency, with the right people who actually do their job, and do it right, (b) THANK THEM when they do help us and treat us properly, and (c) keep complaining when you get mistreated. The job of case managers is a thank-less job most of the time, and some are overworked and underpaid, but that's no excuse for unprofessional behavior.

I'm sorry you had to go through that. Maybe a little research and the word of other clients can help you find better quality services.

[MarkintheDark]

Thank you @hippo1010.  You nailed all the talking points and it's particularly telling you've been on BOTH sides of the issue.

In fact, once my contact was finally successful, the issues were resolved pretty quickly, having also found their way up to the district level.  And, yeah, I made sure to thank them.  From my own experiences at four agencies over many years, the worst tendency, as you described with the "drug" issue, is gaslighting.  A one-size-fits-all solution is among the red flags.  One advantage to being an LTS who saw the early days (ACT UP, etc.) is that, no, I will not be silenced.  Hell, this is MY care.

I'll add that I'm lucky enough to have a very competent, well-versed therapist to whom I described the situation.  When something like this comes up - look, I know I'm not always right - he's a sounding board who will be candid with me if he believes I'm wrong.  He was incredulous and told me in no uncertain terms that, if it wasn't resolved to my satisfaction, he'd support my efforts in making the complaint official with the county.

As you infer, we're still our own best advocates.  Inadvertently, I think it ends up helping those who don't believe they have a voice.