About thirty per cent of people who sign up for weight loss programs, medical or pop, will stick and succeed. About thirty per cent of people diagnosed with diabetes will change their diet and succeed. About ten per cent of everyone who tries something addictive (from alcohol to opiods) will be hooked to the degree that they probably never kick. I can’t cite you the studies. I’m just trying to break up some of the absolutes, the assumption that everyone who has a physical problem will be “fixed” by diagnosis, meds and behavior change. We ‘get’ meds. But even the simple habit behavior of taking them is neither automatic nor easy nor best done alone.
Thirty per cent of the people in AIDS primary care stay. That means seventy per cent of people with a lethal disease are offered help but leave it. Why is this? In fact, the people who manage this primary care, the social workers, often leave the system as well. Why is that? The first impulse is to do something to “fix” the “broken” clients, because that’s the basic assumption of social work. But what about “fixing” the social workers and their attitudes, their oppositional and identity-destroying tasks? Why are they so often female and usually middle aged? How does the Nightingale become Nurse Ratched?
Here’s some evidence to show how the kids feel about it. I assure you that Native American kids, Jewish kids in the Bronx, and wild-ass kids in the Carolinas all feel the same way for the same reason: THEY ARE NOT INCLUDED. The SW’s and nurses and people sit on panels to talk about kids the way they would talk about managing cows, as though THEY were the only ones to know how to have a calf, as though THEY were the cows. They are mostly doing that because men will not. Men are doctors, principals, coaches, politicians. They are important and make a lot of money. Women are care-takers, which is not considered a profession. They are the ones who put in the catheters, grade the papers, prevent the low scorers from playing in the football game (unless overruled by the administration), and go to the customer counter to tell the citizens why they can’t build where and how they want to. They do the dirty work. They are untouchables.
The only people who are lower are the clients, esp. the ones who have fucked up, the poor, the diseased, the unwanted children. LOWER people have no say. They are lower because they don’t know how to do anything, they have no resources, and so on. Stigma.
All this is a very screwed up understanding of the way society works when it succeeds. It works when it is a collaboration, when the clients are empowered, when they get to work for their own salvation and improvement on their own terms by their own definition. If only 30% of a shop’s customers ever returned, then the shop owner would do some very serious rethinking.
We are accustomed to thinking of medicine as a “bug” addressed by a “pill.” No longer can we think that way. Only a small percentage of the “cure” or control is molecular meds -- though it IS addressing a bug (virus, bacteria, malfunctioning body) and though it is a medicine that might be administered in a pill, a liquid, an IV line, an implant, a nasal vapor, and so on. To work, these very powerful but subtle molecules must be exactly quantified, administered on schedule, never skipped. They have nasty side-effects (worse than going to the dentist), cost way too much, can only be acquired with effort and begging, and even then are sometimes simply not available because they weren’t manufactured and shipped in a timely manner. I’m not talking about exotic AIDS drugs -- I mean my own ordinary metformin prescription for diabetes II.
To achieve all these things requires a support system: someone to check the computer at the pharmacy, someone to run interference, someone to remind you, someone to nurse you when the symptoms are overwhelming, someone to get help in an emergency, someone to see what you need when you can’t see it yourself. There’s no reason why every one of these persons must be adults, medically trained, or official in any sense. A lot of it is ordinary parent stuff: temps, bp, oxygen levels, nausea mitigation and hydration, cleaning. Kids can do it for kids, if they have access to the information and maybe some skill training. Adults who make a living as social workers, nurses, home visit helpers, are not motivated to admit this is possible.
Simply knowing about dire consequences will not be enough to change the behavior of people. Mostly I’ve been thinking about two populations: kids with HIV-AIDS and small town folks (esp. women) who have diabetes -- that’s me. Doctors who have threatened me with going blind and having my feet sawed off only paralyzed me. Even the many slick magazines with their hints and tips and “possible cures,” the endless recipes with sugar replacements and so on, just interfered with me trying to get clarity about what was factual and what the parameters were. What did I HAVE to do to prevent eye damage? What diet standards did I have to obey? What was the solid evidence? And so on. Specifically.
The finger sticks for glucose monitoring are wicked -- not because of pain but because no one will really tell you want they mean. Those little tags to stick in the gizmo cost a dollar each. You take the numbers and keep the charts and eventually you just get tired of it, esp. if the readings stay normal. And the companies that make the readers are careful to make them go obsolete in a few years, if only by not making available any more of the right little tags.
Beyond that, diabetes is like feminism in that suddenly a raised consciousness reveals how much sugar controls relationships in our society. Every clerk has a little dish of candy, every bank cashier has suckers to give kids, every church service is followed by “coffee” which is really treats. Substituting carrot sticks for cupcakes won’t do it. I don’t know what specifics affects kids with HIV-AIDS in this way, so I reckon a person will have to ask them. But I expect they know what is sweeter than sugar: sex.
What I’m saying is that popping pills or should be only a small part of a modern life. What we need to recover is the old-fashioned stuff where people kept track of each other and lived “regular” lives guided by habit patterns and predictability. A little Victorianism is a good thing. Ask Dr. Bramwell, eh? Streaming on Netflix. I don’t suppose many street boys sit around watching old PBS/BBC shows, but some of the rest of us do. Each episode illustrates vividly than pills are not enough when poverty is the affliction.