How Collapsing Social Infrastructure Led to Everyone Becoming an Internet Medical Expert [View all]

[daredtowork]

The vitriol that has been unleashed against "anti-vaxxers" has consolidated a flaw in the Democratic party that used to be just a stereotype fabricated by the GOP PR mill: Democrats are an arrogant ivory tower elite who only patronizingly tolerate the opinions of average people.

While the opinions of the mainstream American public have almost converged with academic science on vaccines, a recent Pew study shows many areas where the public continues to distrust scientists. I don't think these folks should be immediately expunged from the Democratic Party by their Bell Curveous Educated Superiors unless we somehow get points for having the smallest political party in the end. Yesterday I posted a request to dial down the ATTACK(!) tone being taken toward anti-vaxxers, and I argued that this was a broader cultural problem that would need to be approached from the angle of rebuilding consensus.

One of the major breakdowns in consensus was over the source of medical authority, and one of the source of frustration for those who argue against "anti-vaxxers" is the ease with which they start citing their own chain of evidence, journal citations, and expert opinions from their "Advanced Degree in Internet Medical Studies". So I'd like to go over how gaps in the medical and social system encouraged - indeed FORCED - the rise in this phenomenon.

I hope we can all stipulate the American medical system sucks. It has especially sucked in rural areas. At the same time, the decline in labor protections has intensified worker exploitation in ways that increase accidents and stress. People in rural areas and inner cities were offered scanty choice at grocery stores and developed enhanced potential for diabetes and other chronic diseases as a result. On the other end of the scale, welfare was decimated, and it's a lot harder to get SSI/SSDI than the GOP leads people to believe - especially before you're 60. To sum this up - people were sick and in pain, but they had no safety net to fall back on - they had to keep working.

Wait - this is where the reasonable person would say "the doctor is there to make you better when you are sick!"

Not in my experience - at least not if you are poor.

First of all, before the ACA, you were lucky to be able to see a doctor at all if you were poor. Most likely you were uninsured. If you did see a doctor, that doctor was expensive. Even if you had insurance, there was always a "co-pay" and prescriptions might cost a lot of money, too. But, worst of all, it takes MANY - as in years - of visits to a doctor for criteria of a medical condition to build up. Before that all a patient gets is "lifestyle" speeches about diet and exercises while they patiently keep bringing in the same complaints until the doctor notices a pattern (and this is a lot harder to do in "one symptom at a time" circumstances) and/or makes a referral to a specialist (which costs more money!!!).

But note, the patient's goals are different than the doctor's. The doctor wants to get through a day of clinical encounters and for some reason usually takes a skeptic's position against anything a patient has to say (perhaps because this usurps their authority, and they want to make any diagnosis freestyle). The patient wants three things:

1) Diagnosis with proper documentation (the documentation is important for access to State resources).
2) Treatment, usually with emphasis on PAIN RELIEF.
3) Cure for curable disease.

Uh oh. Sometimes doctors can cure stuff, sometimes they can't. They do even less well on pain relief since all the drugs that work are regulated, questioned, and probably prescribed only short term. Diagnosis also takes forever - it doesn't cost doctors a thing to do "watchful waiting" or just shrug "if the medication works, go with it", but the patient still needs that documentation. Who knows what the politics of the doctor is before the patient presents them with paperwork to sign off on their disability, as well. Then there are legal ramifications if the doctor gets the diagnosis wrong. What will happen once Obamacare incentivizes doctors on the basis of "successful outcomes"? Will patients just be declared well, whether they are or not? While all this is going on, triple-booked doctors are seeing patients for 15 minutes at a time and telling them they can only mention one symptom and can't have another appointment for three months.

Sooo...there has been a divergence between what patients need and what doctors do. At least for poor patients. Things have improved under the ACA in that at least poor patients in many States can see doctors and get basic prescription medications, but they are still left to fend for themselves in terms of self-diagnosing complex chronic conditions for years until the medical system catches up to them and trying to do all they can to remedy their own pain and other symptoms.

I know this for a fact because I have a multiple genetic disorders - a very complex medical situation. I was uninsured for years. I live in an urban area, so I have had access to more resources than most, but I grew up in a rural area, so I have a basis for comparison.

Even though I have had access to a medical clinic for three years now, I didn't get to see the right specialists until the ACA kicked in. Before that I was left mostly to my own devices. I did a lot of Internet research on both diagnostic possibilities and natural remedies for symptoms and pain (my situation was especially complicated because I can't take nsaids). I had to trust my own education and common sense to be able to sort out the "science" from the "woo". I had to trust myself not to be a hypochondriac and over-diagnose myself with the most exotic diseases known to humankind. I experimented with a lot of things to find out what works. Reading widely and personal experience made me feel like an expert in some areas.

I should add that I also often needed to document detailed medical information on forms. The need to access government resources based on medical disability gave rise to the need to be able to document that disability in the ways the government demands. This gave rise to an obsession with formal diagnosis as the key to resources. If you have ever wondered about the phenomenon of "activist parents" doctor shopping for children until they had the right diagnosis to get their children into X program, and then continuing to obsess over the disease in Internet forums - this the reason.

Now when I go to the doctor, part of the frustration of the experience is that I know a lot more than I bring up at the clinical visit. I don't bring it up because I don't want to sound like an "Internet expert" or usurp the doctor's authority. But then I get frustrated when he or she doesn't draw what I thought was the obvious conclusion. Is it because my "Internet degree" led me astray or is it because my doctor really did give me short shrift in 15 minutes and my "Internet degree" should be listened to? I'm not sure - I don't have any sounding board for checking this.

I hope this gives people at DU a more considered view of the culture that underlies the development of the Internet Medical Expert, and how this is a symptom of how the medical and social system failed to provide what people actually needed. Anti-vaxxers and other alternative-science-theorists come out of this same petri dish. People could not get what they needed from the system. Scientists and doctors seemingly went their separate way, their noses in the air, not hearing simple requests like: "What do I do about my pain? What do I do about my difficulty walking...?" And I'm sure diet and exercise didn't work fast enough for obese people who needed to keep working while they were suffering, while the suffering prevented them from losing weight. That's probably the story of the entire South right there.

I will end with the same thing I said yesterday: no one has ever been converted by "shaming" or mockery. This theory is simply a pretext for mean-spirited behavior and has nothing to do with upholding the spirit of science.