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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...