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Feb. 1st, 2002 01:30 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rivkaWednesday's Salon had an essay by a man who has been living with AIDS for eighteen years. He was 23 when he was diagnosed, and was told he could expect to die shortly - so, he says, he stopped traveling along the path to adulthood. He never built a career or put down roots or invested his money, because he never expected to be around long enough to need them.
He started getting sick in the early 90s. Those were still the days before protease inhibitors, which didn't really start making a difference in mortality rates until 1997, and about which he says
For some it was too little too late. For others, it was the moment in the movie when the ticking bomb stops seconds before everything is destroyed. For me, it was both.
and then
My first round of protease inhibitors were even less resilient than I'd been.
and finally
I've developed resistance to most current meds available yet my health remains stable. [...] I'm too healthy to die, too ill to assume "normality."
Here's the thing, and it's a card that is very often palmed in these kinds of stories: if he's in this situation with his meds, that means he's been taking them inconsistently. If he's developed resistance to all the protease inhibitors, that means that he threw away regimen after regimen by skipping doses, by stopping and starting, by disregarding instructions. There are other ways to develop resistance - for example, most long-term survivors are resistant to AZT through no fault of their own, because it used to be prescribed as a single-drug regimen before anyone knew that you couldn't do that. With the protease inhibitors, though, and the other recent drugs, it's all about nonadherence.
Does this make his story any less sad? I don't really know what to say. I don't see many people like him in my clinics, children of privilege and gay high society brought low by AIDS. But I see lots of people in his situation: still alive long after having given up on life.
The thing about his predicted death sentence, likely enough when it was imposed upon him at the age of 23, is that it didn't just absolve him of the necessity of becoming an adult - it left him permanently excused from the responsibility to care for his own health. When he was diagnosed, there was nothing that could be done for people with HIV, and precious little they could do for themselves. Comfort care, mostly.
The state of the art has changed, but many of the underlying attitudes haven't. Hopelessness. Fatalism. Often the same people who rage against the doctors for not doing enough, or "the system" for not having a cure, are the ones developing resistance to drug after drug because they haven't really committed to their treatment. Because they don't really believe, at a deep and maybe unconscious level, that anything can be done. Because in their hearts they are dead men walking.
This author, this Hugh Elliot, has to know that the reason for his drug resistance is his own nonadherence. After they've had to change your regimen a couple of times, they tend to harp on it. But he doesn't acknowledge it. Most AIDS narratives don't. I've become so acutely aware of that omission. Probably sometimes it's self-serving, a desire to appear the innocent victim. More often, I think it's a matter of learned helplessness, the conditioned absence of a sense of control over one's situation.
I do my best. But sometimes I feel as though I'm trying to sweep back the sea.
He started getting sick in the early 90s. Those were still the days before protease inhibitors, which didn't really start making a difference in mortality rates until 1997, and about which he says
For some it was too little too late. For others, it was the moment in the movie when the ticking bomb stops seconds before everything is destroyed. For me, it was both.
and then
My first round of protease inhibitors were even less resilient than I'd been.
and finally
I've developed resistance to most current meds available yet my health remains stable. [...] I'm too healthy to die, too ill to assume "normality."
Here's the thing, and it's a card that is very often palmed in these kinds of stories: if he's in this situation with his meds, that means he's been taking them inconsistently. If he's developed resistance to all the protease inhibitors, that means that he threw away regimen after regimen by skipping doses, by stopping and starting, by disregarding instructions. There are other ways to develop resistance - for example, most long-term survivors are resistant to AZT through no fault of their own, because it used to be prescribed as a single-drug regimen before anyone knew that you couldn't do that. With the protease inhibitors, though, and the other recent drugs, it's all about nonadherence.
Does this make his story any less sad? I don't really know what to say. I don't see many people like him in my clinics, children of privilege and gay high society brought low by AIDS. But I see lots of people in his situation: still alive long after having given up on life.
The thing about his predicted death sentence, likely enough when it was imposed upon him at the age of 23, is that it didn't just absolve him of the necessity of becoming an adult - it left him permanently excused from the responsibility to care for his own health. When he was diagnosed, there was nothing that could be done for people with HIV, and precious little they could do for themselves. Comfort care, mostly.
The state of the art has changed, but many of the underlying attitudes haven't. Hopelessness. Fatalism. Often the same people who rage against the doctors for not doing enough, or "the system" for not having a cure, are the ones developing resistance to drug after drug because they haven't really committed to their treatment. Because they don't really believe, at a deep and maybe unconscious level, that anything can be done. Because in their hearts they are dead men walking.
This author, this Hugh Elliot, has to know that the reason for his drug resistance is his own nonadherence. After they've had to change your regimen a couple of times, they tend to harp on it. But he doesn't acknowledge it. Most AIDS narratives don't. I've become so acutely aware of that omission. Probably sometimes it's self-serving, a desire to appear the innocent victim. More often, I think it's a matter of learned helplessness, the conditioned absence of a sense of control over one's situation.
I do my best. But sometimes I feel as though I'm trying to sweep back the sea.
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I was wondering...
Date: 2002-02-01 11:25 am (UTC)I notice a similar behavior in people whose family lines tend to die young. They seem to get a fatalistic attitude relatively early in life (usually in their early teens), figuring that it doesn't pay to deny oneself anything, since life is going to be short, anyway.
Same thing in kids who feel that their fate is to end up in jail, or who feel that they don't have any reason to hope, yeah?
How does one work to change that sort of thing?
Re: I was wondering...
Date: 2002-02-01 11:59 am (UTC)Heh. Did you pick up on the drug resistance/nonadherence thing, or were you just wondering in general because it was an HIV piece?
How does one work to change that sort of thing?
With this guy, who's intelligent and introspective? By working with him to dig out the assumptions and laying them on the table, where they can be examined and tested. (Typically, assumptions like "nothing I do will make any difference anyway" are not at the level of surface awareness - after all, if they were, he'd refuse the pills in the first place.)
In other situations? Once I worked with a client[1] to graph her CD4+ (T-cell count) since diagnosis, with all the ups and downs. Then we added event labels to the graph: "Okay, when you were diagnosed your count was here. Then you started meds, and it shot up to here. Here's where you started using drugs, see it going back down?... here's the real heavy binge... here's where you went into rehab, and it's been going up slowly but steadily since then." Until she saw it presented visually like that, she hadn't really grasped that her behavior made a difference. Even though we were talking about how she'd screwed up her counts, it was still inspiring for her to realize that she had control.
Sometimes you just have to start small, and walk the person through making tiny change after tiny change, in hopes that eventually they'll build up a picture of themselves as a competent person, as someone whose future isn't predetermined. But, you know, there's not always enough time. That patient I had who died recently, he eventually came around to seeing himself as a person with control over some aspects of his life - but by then it was too late. He'd run through all the drugs on the market.
[1] Details of this story have been substantially changed to protect confidentiality.
Re: I was wondering...
Date: 2002-02-01 03:17 pm (UTC)I didn't catch the nonadherence, although I suspected it. He uses some HIV patient jargon that obfuscates things for me.
Thanks for the followup on what you've been able to do. Is this sort of thing becoming a more regular part of the treatment regimen?
I'm also wondering how to extrapolate from your method to a wider "people who feel powerless" concept, but I suspect it's one of those "one case at a time" things. No one solution fits all...
no subject
Date: 2002-02-01 01:51 pm (UTC)no subject
Date: 2002-02-04 07:14 am (UTC)no subject
Date: 2002-02-04 09:44 am (UTC)I understand your hesitation. I suppose if I was going to open that can of worms I'd use the standard "now, I'm not blaming the victim" dodge, and word things as considerately as I could. It still seems like an important counterpoint to make. Do you suppose someone will make it?
no subject
Date: 2002-02-04 10:01 am (UTC)You forgot the regular church attendance. I know, it's awful. Soon I'l throw out my last tie-dyed T-shirt and my old Birkenstocks, and my liberal friends won't even recognize me.
It still seems like an important counterpoint to make. Do you suppose someone will make it?
It's a counterpoint made more often in the AIDS press, where this kind of misdirection is harder to get away with, than in the mainstream press. After all, HIV drugs are a complicated subject, and (for example) it's unlikely that the Salon "Life" editor understands them.
I'll see if I can come up with a way of wording "Look, you forgot to mention to all these nice people you're hitting up for some pity that you had a chance at a second life with protease inhibitors, and you threw it away" that sounds a little less hard and unforgiving. The problem is that AIDS is such a cultural and moral bonanza of symbols: it's God's punishment, it serves you right for having such an immoral lifestyle, it's an outward sign of your inner awfulness. There's been a rightful backlash against that, but one that's gone a little too far - such that it's hard to criticize AIDS patients for anything at all without being seen as one of those nasty moralizers. Even when you're talking about blatantly obvious things, like "it's wrong to have unprotected sex if you're HIV-positive."
Okay. Maybe I'll work on it. Without getting all frothing-at-the-mouth and indignant, if I can manage it.
no subject
Date: 2002-02-01 06:49 pm (UTC)no subject
Date: 2002-02-01 06:57 pm (UTC)[oops, posted by accident before I was done] What a mixed blessing that is. A friend of hers--Dr. Joyce Wallace, whom you may have heard of, who runs FROST'D in New York--is tearing her hair out because the HIV infection rate is up in the population she works with, for the first time since she started (she works with streetwalkers and the homeless, primarily). People are so sure now that meds will work, that the protease inhibitors are magic bullets, that they're becoming careless. And yes, it's wonderful that it is so treatable, but... it's like people who think that if you take antibiotics until your symptoms go away, you're cured. No, it's like thinking that if you have antibiotics in your medicine cabinet, you can't get sick. It's like not understanding that the 'flu that's going around isn't just sniffles and aches, it's the same influenza that's wiped out thousands upon thousands of people in bona fide epidemics, and that it still kills people every year. AIDS isn't scary anymore, not to the man on the street, and that makes it more deadly than ever.
You have the job of making it scary, and then convincing people that they can still beat it, even though it's scary, and then helping them remember both halves of that. I don't envy you. But you have my very deepest admiration.
no subject
Date: 2002-02-02 10:55 am (UTC)We've never, never, never had good estimates of the HIV infection rate. Evidence for the number of AIDS cases, sure, because people with AIDS are sick and show up in emergency rooms. But such vast numbers of at-risk people (especially in inner city populations) don't get tested that it's hard to draw conclusions about base rates from the numbers of folks who do test positive.
We submitted a grant last year to do mobile rapid HIV testing across the Baltimore area, in efforts to come up with a better estimate of the prevalence of HIV than you'd get by looking at the minority who come in to the health department to get tested. We didn't get the grant, for reasons which I understand have more to do with CDC politics than anything else. *sigh*
All of this is to say: maybe there's just been an increase in the percentage of people in the population she serves who are actually getting tested. Or maybe there are more infections; it's hard to say.
People are so sure now that meds will work, that the protease inhibitors are magic bullets, that they're becoming careless. And yes, it's wonderful that it is so treatable, but... [...]AIDS isn't scary anymore, not to the man on the street, and that makes it more deadly than ever.
My mileage varies. I've heard about this problem you describe, mostly in the context of urban gay communities in places like New York and San Francisco, but I really haven't seen it in the drug-using inner-city primarily-heterosexual community I serve.
AIDS is still scary here - most of my clients have at least one story of a relative who makes them eat off paper plates, or won't let them hold the baby, or cleans the bathroom with bleach every time the person with HIV uses it. And I don't see widespread faith in the meds, either. The more common misconception I see among newly diagnosed people and their families is that you get HIV and die right away. So there's nothing really to be done, so why bother to get tested and go to the clinic? When it's your time, you die. It's not even like HIV is the biggest problem they face - when you're homeless, or dope sick, or living in a neighborhood with regular drive-by shootings, how can people expect you to make your top priority a disease that might kill you in 10-15 years?
I think it really is a different epidemic in resource-rich, well-connected communities. But don't let me get started on the white gay AIDS lobby, or I'll rant all night and alienate most of my readers.
sometimes I feel as though I'm trying to sweep back the sea.
Date: 2002-02-02 02:55 pm (UTC)Re: sometimes I feel as though I'm trying to sweep back the sea.
Date: 2002-02-03 06:41 am (UTC)Re: sometimes I feel as though I'm trying to sweep back the sea.
Date: 2002-02-05 12:34 am (UTC)