Perspective.

[rivka]

Last year I went to visit one of my clinic patients who was temporarily in inpatient psychiatry. Afterwards, I leaned against the nurses' station looking through his chart.

"You work at [name of HIV clinic], huh?" a nurse asked me. "How do you like it there?" Her sidelong glance made it clear that this was not a straightforward question. At first I thought she was referring to the famously dysfunctional clinic politics.

"It's interesting work, and I like the patients" I said, or something like that.

"You're not afraid to work there? I would be."

Then I realized what she meant. She worked on a locked ward in which every single patient was considered a danger to self or others, and she wondered why I wasn't scared to work with people who have a particular not-easily-spread viral infection. Oh yeah. I forgot.

"Aren't you afraid of catching HIV in the clinic?" my sister asks.

"What the hell do you think I do at work?" I ask, and laugh. But it's not funny, not after the third or fourth encounter, not after I've spoken with clients who are afraid to hug their own grandchildren because you can never really be sure. Not after hearing about families serving meals on paper plates and the can of Lysol in constant use.

Not after hearing educated and kind people argue that there's a reasonable case to be made for paper plates, "because it's your life at stake." Because they say HIV can't be tranmitted casually, but that might just be PR. Because it's natural and understandable to be squeamish about touching something a person with HIV has touched.

I guess I don't have any perspective at all about HIV anymore. Some days I interact with more HIV-positive people than HIV-negative people. I shake hands, I put a consoling hand on their arms, I hug them sometimes. They bring in homemade cookies and I eat some. I use the bathrooms and the doorknobs and the pens they have used. I look at their wasted limbs and lipodystrophy humps and rashes and KS lesions and open sores. I sit in clinic rooms in which they have been examined, in which they have bled, propping my notebook up against the sharps container. I'm not afraid.

I've been afraid of contracting tuberculosis. I've been afraid of head lice. I've been afraid of infecting my hypothetical future child with congenital cytomegalovirus, until one of the docs straightened me out. I've been afraid of being hit. But I'm not afraid just because I deal with people who have HIV.

I don't know anymore what's reasonable to fear and what isn't. I don't think I'm strangely brave, or anything, but at the same time I can't conceive of thinking that these fears are reasonable or normal. There been more public education about AIDS than about any other public health threat in history. Shouldn't people know that they're not at risk from casual contact? Shouldn't they at the very least know that their fears are irrational, that their squeamishness is something that ought to be overcome?

*sigh* Or am I the weird one, the fish who can't see water?

Comments

[wiredferret.livejournal.com]

I think it might just be that you have only a rational avoidance of HIV. It might also be that you know, if you get it, it's not automatic death in a year, or even 10. You know how the therapy works, and believe that you could follow it through. Out of all of us, you are the person most aware of how even people who repeatedly screw that up can stay alive for much longer than expected. Maybe it's not as fearsome to you as things you can do nothing about.

[rivka.livejournal.com]

It might also be that you know, if you get it, it's not automatic death in a year, or even 10. You know how the therapy works, and believe that you could follow it through.

I haven't gotten any less rigorous about safer sex, though. I do think sometimes about "what if I got it?", and I probably do have a better sense of what that would actually be like than most people do. But when I think of how I might contract it, I think of things like street rape, or assault-with-biting by a patient. I don't worry about getting it through my normal activities.

[jinian.livejournal.com]

People should know. I know. I think I'd still be a little weird about dealing with someone intimately, but I'd be okay with a little practice.

If your patients really have to deal with that kind of thing, at least it is a very good thing that they have you. Good job.

[mactavish.livejournal.com]

(I'm thinking your user icon would make a great tshirt.)

I don't know what's weird

[redbird]

People do weird things about risk estimation. Among others, we tend to overestimate the risks of things we aren't already doing and underestimate those of the things we do every day (whether that's working in a locked ward, or driving on the freeway).

We think the unfamiliar is dangerous. Even now, 20 years into the epidemic, the U.S. is full of people who've never knowingly touched anyone who is HIV-positive, who think of AIDS as a strange thing that anyone can get, that hides in people's bodies. Or it's the horrible enemy that's eating their sister or husband or child alive, and they don't know how to deal with that. So they overcompensate, in harmful ways.

You're the fish who has seen water, and knows what a current is, instead of being swept along blindly.

Here are a couple of *hug*s: pass them along to people who need them.

[kightp.livejournal.com]

*sigh* Or am I the weird one, the fish who can't see water?

Well, if you are, I hope there's room for two of us in the pond.

I've had houseguests who are HIV-positive and who have fullblown AIDs. It's never occurred to me to treat them differently than any of my other houseguests - other than to make sure I'm not doing anything to put *them* at risk (warning an immune-suppressed friend, for instance, that the household is down with a collective cold, in case he wanted to postpone his visit).

We cook together, eat together, hug hello and goodbye. We don't have sex, but then, the specific individuals in question are all queer men, and I'm not exactly their type.

I think it's a knowledge thing. You know (as I do) enough about this disease-state to understand where the real risks are - and aren't. Despite all efforts at education, a lot of people don't. You also have something of a scientist's perspective; people without that perspective sometimes have ... odd ... notions about illness in general.

Hell, I take bigger risks to my health every time I light a cigarette.

[rootie-kazootie.livejournal.com]

Way back when...
People thought you could get cancer by touching somebody with it. They were afraid to breath the air they breathed. It took years for people to believe this wasn't true. My grandmother died of undiagnosed cancer because of her old fashioned beliefs. She knew she was sick for years. Education and time will reassure those who are still afraid of people with HIV.

[rivka.livejournal.com]

Way back when...
People thought you could get cancer by touching somebody with it. They were afraid to breath the air they breathed. It took years for people to believe this wasn't true.

Sadly, some people with cancer still run into people who don't want to touch them, or who serve them with disposable dishware. Probably fewer than with HIV, though.

[jenett]

I've been thinking about this since reading your comments on rasff.

I am suddenly very glad for something my mother did for me. When I was 12 or so, my piano teacher (a gay man, also the organist at our parish, was diagnosed with HIV. (This would have been around 1987 or so)

Mom never even considered whether I should stop having lessons. When he became too easily fatigued and couldn't keep up with the music director position, she drove me into Boston to his apartment, and I had my lessons there.

I ended up giving up piano for other reasons at the end of that year, and he died a year or so later. I didn't go to the funeral, but I know my mother sent a condolence card to his surviving partner.

I've been at schools which had very clear HIV policies (which makes me suspect that they had students who were HIV positive - my boarding school had such a policy, and I'm pretty sure college did) and I was fine with that, even in my late teens.

I don't personally know anyone with HIV right now (as in, I might know someone and not know they're HIV positive personally, though I sort of doubt it right now. I wouldn't be surprised if someone I knew solely online were. But no one directly in my life I interact with physically, that I know of)

But I think that -given all the education about it that's managed to sink into *my* head - and given the model my mother set up for me (I think despite the disapproval and fear of some of her peers in the church. Huh. Now I think about it, maybe that was part of the motivation for leaving that parish, too.) I'd treat them the same way I'd treat anyone else.

I'd try to be aware of health concerns (like if there was a cold or something going around or I were recovering from and someone with a suppressed immune system for any reason), but I'm not scared by the chances of infection.

There's so much other stuff out there that's more contagious, like you said.

It's an irrational fear thing

[sinboy.livejournal.com]

People have it. Lots of people have it about radioactivity, which is my personal pet peeve. As a kid, my mom used to store test samples of radioactive iodine in our fridge. THese days, I hear almost everyone talk about radiation as if it would sneak up on you and infect you like a virus, or if you were exposed to it, you'd be radioactive.

Of course, that's all untrue. But the fear is still there. I'm reminded of the hullabaloo over NASA's use of the Cassini probe because it had a Radio Thermal Generator using < GASP > plutonium as a heat source. These RTG's have been slammed into the ground at high velocity from thousands of feet up with no serious damage or danger. They're safe. In fact, more radiation is released into the atmosphere by volcanoes every year than by this sort of device.

But people were still scared. Because it was radiation. And radiation is scary. You can explain it seven ways from sunday, but people will still be scared. Because they were trained to be scared.

[kalikanzara.livejournal.com]

One more vote with the rest.

I think, honestly, I'm more afraid of Tuberculosis than HIV/AIDS. I was an EMT for a couple of years and we had to go through all the pathogen/havards training; got immunized for Hepatitis-B, learned that HIV external to the body died easily whereas Hep-B was pretty tough. Got trained on the Darth Vader mask - I think I'd have terrified any patients treating them while wearing the Positive Pressure Respirator thing that we were supposed to use if we suspected Tuberculosis. And that stuff is airborne, and there's more antibiotic resistant Tuberculosis out there, and...well.

Maybe it's a side effect of the fact that the US is sex-phobic anyways, and HIV is viemed primarily as an STD. Kinda like the difference between the public view of genital herpes vs. oral - HSV-I is infecting people genitally these days and HSV-2 is getting passed orally, the dag-nabbed virus* is the same, but somehow the stigma is different.

Anyways. Regrets for ranting in your rant, or maybe solidarity in ranting, or something.

[camwyn]

As far as I can see, you're fine. I had the same argument with a high school teacher of mine, back when I thought I was going into public health for a career and would probably wind up in Africa. (I didn't go into public health because the politics was overwhelming, but the training remained in place.) She asked if I wasn't afraid of HIV; I told her frankly that I was more scared of Ebola than HIV, and more scared of sleeping sickness than Ebola, and more scared of drug-resistant malaria than sleeping sickness. Some folks don't know enough not to be afraid, and some folks do, and the 'enough' line is different on every person. Sadly, it's damned hard to lower that line on so many people...

It's bloody stupid. If it came down to it I'd sooner shake hands with, I dunno, Greg Louganis than someone with poorly controlled TB. There's so many more contagious diseases to worry about. HIV is not all that scary if you're careful.

People just don't know better. Gonna be a while to convince them otherwise.

Just another fish

[scherazade.livejournal.com]

Think like what somebody else said, people are afraid of the unknown and as much as we try to convince them otherwise, experience is probably the best teacher to make them understand. Many people who I have met who were afraid of catching a bug or contacting a disease are forced to come to terms with it when a loved one succumbs.

Sometimes irony and life's unexpected turns are probably the best cures for fear...

[elynne.livejournal.com]

More people die in car wrecks in a week, if not a day, than died on 9/11 last year. But people don't talk about fearing cars, or driving - they talk about fearing terrorists, airplanes, and anthrax.

I'm a bit cranky about how AIDS seems to be portrayed as the Big Bad Bogeyman in popular media, which of course makes ordinary people who don't want to have to think too hard afraid. No, wait, I'm being way too cynical here. :P Sorry. *hugs*

[therealjae.livejournal.com]

You're not the weird one. And this was beautiful.

-J

[elisem.livejournal.com]

Maybe by asking you about it, those folks are taking steps towards defusing their fear.

Or maybe I'm too optimistic. But I can hope they are, and I do hope so.

And you're not a weird one, at least not if weird = bad. (If weird = good, that's another story, and you can come sit by me anytime and tell tales of how it's going. Next time we're in the same locale, I am going to schedule things better, and that is a promise.)

Sad.

[mittelbar.livejournal.com]

It makes me wonder if it's even possible for your average person to learn and understand science, much less pass knowledge on accurately.

Not in a cynical "I hate stupid people" way, but in a "wow, maybe there really is something about human nature that makes retaining facts, using reason and drawing logical conclusions very difficult" way.

[trinker.livejournal.com]

I suspect that for many people, being queasy about dealing with someone HIV+ is so theoretical that they don't have to examine their reactions.

I know a few people who are utterly bonkers about germ-phobia. Verging on Howard Hughes-ish. When they include HIV in their germ-phobia, I tend to roll my eyes, because nothing I say is going to dissuade someone who's afraid to eat anything not totally "sterile".

OTOH, I've encountered people who don't engage in basic hygienic measures against catching colds and flu (washing hands, etc.), or spreading it, who are AIDSphobic. Perhaps it's unreasonable for me to compare someone's measures against "the common cold" with HIV, but if someone doesn't compulsively wash their hands before eating, but *does* get crazed about Lysol and paper plates...Maybe it makes sense to them because "colds aren't fatal", but when you're far, far less likely to get infected with HIV...

I'm not sure I'm being coherent as I write this, because it's a topic that gets me rather heated.