"Pain is a sign that something is wrong"

Feeling compelled to spill my guts, literally, today. I'm doing an experiment at the moment where I am delaying my morning dose of medications as long as physically possible to explore the chronic pain I am experiencing more thoroughly. Like most people, I am hard wired to shun pain. Pain is a sign that something is wrong, I say this in my mother to mother breastfeeding support often. Like a mantra. Get help if it hurts. You don't have to do this alone. You've got a team.

Those words feel hollow to me. I am low. "My heart is low, my heart is so low, as only a woman's heart can know." My experience with navigating the systems involved in asking for help is that you kind of do really have the capacity to advocate for yourself, and this isn't a comforting thing to hear when you are in pain and struggling to find a resolution. You really do have to do a lot of things on your own to get access to appropriate help, in many circumstances.

This is so not cool, I can't even. But this is the reality of the medical system that we currently exist in - and it is something that we really need to get together on to advocate for change.

I was listening to an NPR call-in show the other day that was featuring a panel that discussed the high rate of medical error and related mortality in the United States. It's the third leading cause of death, just behind heart disease and cancer, but is not currently listed or tracked by the CDC using an instrument that is sensitive enough to capture the true impact of human error. So there is this invisible thing that is killing a lot of us while we also simultaneously operate within a system that deifies the judgment of doctors who are, themselves, working within a flawed system.

Everyone says the medical system is flawed. Well, lots of people do - except one of the callers to the NPR show who was a healthcare provider himself, whose only compliment to the system was, "Look, the US healthcare system is....[pregnant pause]...um, pretty good!" Yes, friends. An ad slogan to get behind:

How do we compare to Canada, or Germany? Well someone bothered to answer that question in a very detailed article. I'm not going to re-invent the wheel. As expected, the US scores lower in comparative epidemiological statistics (life expectancy, infant mortality, the cost of healthcare per capita). Hey, at least we aren't stepping over people dying in the street, right? Amiright? !! LOL, nope....awkward.

I've had a few bouts in the ring with the US healthcare system. Once, early in my life, left me with a disdain of the system that resulted in a 10 year hiatus from any kind of preventive care or checkups aside from the prenatal care for my unborn children. Once I had a steady job that provided, well, insurance, I went to a checkup. I was greeted with a system that was stymied in the problems that had initially driven me away. But this time was going to be different, I thought. I am armed with a level of education that matches that of any doctor, and I am more able to advocate for myself now as an empowered, adult woman.

Story time...

I had a nagging lower back pain that I attributed to the normal issues related to aging. I think the first time I really was bothered by it, I went to my OB-GYN who had delivered my youngest child in an unplanned hospital delivery after a failed attempt at home birth. He examined me, did a pap, explained that "as women age they may feel more discomfort in that area." WTF that means, no one will ever know. This doctor suffered a family loss and I was lost to followup in the intervening months, attributing my random abdominal/lower back pain to whatever, I don't know, getting old? I'm 36, so I'm actually not REALLY old. In Hollywood terms I am geriatric.

Anyway, months went by. I saw two primary care physicians, three psychiatrists, an internal medicine specialist, a PA, a nonsurgical spine doctor, another OB-GYN, and I've done chiropractor visits and 4 weeks of physical therapy. I've had an X-ray, an MRI, urinalysis, metabolic panels, an ultrasound of my uterus and ovaries, an ultrasound of my lower back. I'm now even more affected by pain than I was 6 months ago. 

The Complaint-Based System doesn't work for healthcare


I can see very viscerally that there are some issues with the system that I have to navigate. Would that I could offer my input and not be considered a complete dipshit...but, really, the insurance billing scheme controlling the way in which tests and preventative care are offered seems a bit backwards. Wouldn't it save money to just do an MRI of the entire abdomen, rather than one that is both complaint and specialist-specific? Rather than this that and the other test? But testing can only be complaint-specific under the current billing scheme.

Specialists operate in silos completely independent of one another, and it is up to the patient to bring all these people together and facilitate their communication process. Error in something as simple as writing the instructions on a prescription can cause a patient literally hours of extra work communicating between go-betweens. 

The issue of silos in healthcare is not new, by any means, Look at this white paper from 2011. There is a really established literature base detailing how silos in healthcare are making us sick, and possibly even killing us...but these models perpetuate because of how we approach care, based on the billing schemes that have been established by the insurance industry. Providing care based on how you are paid or reimbursed will never result in a high quality of care across the board. The most vulnerable and the poor will always suffer in these situations.

The people who directly offer care are overworked and their ability to be compassionate is fatigued beyond repair. The people who manage the care that is offered by the overworked, compassion-fatigued direct care providers are too removed from the process to understand the holistic impact of the narrow field of care they attend to. 

This is a complaint-based system. These rarely work. The epidemiological statistics show that as a society, we are in pain. If pain is a sign that something is wrong, I suppose it follows the current medical model that we continue addressing the symptoms rather than the cause, until the whole thing comes tumbling down.

If we truly want to cut healthcare costs, we need to revamp the complaint-based system and re-work our approach to truly commit to the shift to preventative strategies. These will not flourish under the existing schemas. This will require a massive shift in the way we think about delivery of healthcare. Can it be done? Right now I'm not so sure.


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