Patient vs doctor, a classic struggle

I’m finding interaction with AI models provide an instructive context that grants me new insight into my lengthy T1D struggle. In particular, my relationship with my endocrinologists has at times demoralized and then energized me in my T1D journey.

I began my discussion without a diabetes focus by asking why an exceptional competitor typically engages a classic villain?

An exceptional competitor engages a classic villain to establish a clear moral hierarchy, create high-stakes conflict that tests their absolute limits, and give the audience a definitive spectacle. This dynamic elevates a simple contest into a legendary struggle, providing an undisputed contrast of values.

This classic storytelling and strategic dynamic serves several key functions:

  • Moral Clarity: By facing a universally recognized antagonist, the competitor instantly frames their own actions as righteous and necessary, winning the audience’s immediate support.
  • Maximum Stakes: Villains typically threaten ultimate destruction or disruption. Overcoming this level of existential threat proves the competitor’s true strength and resilience.
  • The Catalyst for Growth: A formidable adversary forces the competitor to evolve, innovate, and break through their previous limitations. [1, 2, 3]
  • Audience Catharsis: The eventual downfall of a classic villain provides a deeply satisfying release of tension for the audience, reinforcing that talent combined with morality ultimately triumphs.

Looking back at my 42-year history of interacting with “diabetes experts” and how the most substantial metabolic gains didn’t materialize until I viewed my struggle with diabetes in contrast with the mainstream medical viewpoints of the typical endocrinologist. I can now see that moral clarity fueled my sustained interest in the philosophical tension I felt with my clinicians.

The above four points were especially apparent as I made fundamental changes that absolutely improved my A1c, body weight, total daily insulin dose as well as a marked improvement in my quality of life. This all pivoted in 2012 when I assumed full ownership of my diabetes and reduced my expectation of doctors to a more rational level.

I followed up my initial prompt with this one:

explain how this dynamic plays out in the conflict between a highly competent insulin-using diabetic and his classically trained and tradition bound doctor?

Here was the response:

In this specific medical landscape, the “hero-villain” dynamic shifts away from moral malice and transforms into a clash of paradigms: an empowered, highly competent expert-by-experience versus a rigid, algorithmic gatekeeper.

Because an insulin-using diabetic makes life-or-death dosing decisions multiple times a day, they possess real-time, highly granular data about their own biology. When paired with a classically trained, tradition-bound doctor who relies on standardized, outdated guidelines, the classic narrative conflict plays out through distinct, high-stakes tensions.

1. The Core Value Conflict: Precision Living vs. Algorithmic Safety

  • The Competent Diabetic (The Pioneer): Operates on real-time data from tools like Continuous Glucose Monitors (CGMs). They utilize aggressive, micro-targeted strategies—such as dynamic insulin-to-carb ratios, pre-bolusing, and adjusting for stress or exercise—to keep their blood sugars in a tight, non-diabetic range.
  • The Traditional Doctor (The Gatekeeper): Operates on static data, primarily the three-month HbA1c average. Their classical training prioritizes a “one-size-fits-all” safety buffer. They would rather a patient sit at a chronically elevated, safer blood sugar level than risk the acute liability of a low blood sugar event (hypoglycemia).

2. The Narrative Clashes

In a classic conflict, the antagonist attempts to restrict the protagonist’s autonomy using institutional power. In the clinic, this manifests across several battlegrounds:

  • The Threat of Institutional Sabotage: The traditional doctor handles the prescription pad. If the competent diabetic requests tighter control or advanced tech, a tradition-bound doctor may view this as “non-compliance” or dangerous experimentation. They might weaponize their institutional authority by withholding access to advanced tech, refusing to write prescriptions for tight-control insulin amounts, or threatening to drop them as a patient.
  • Data vs. Dogma: The patient brings highly detailed charts proving that standard advice—like eating a rigid amount of carbohydrates per meal—causes intense blood sugar spikes. The tradition-bound doctor, viewing this through the lens of classical medical hierarchy, often dismisses this lived evidence in favor of the established textbook doctrine.

3. The Catalyst for Patient Growth

Just as a classic villain forces a competitor to reach their absolute limits, a rigid doctor inadvertently forces a highly competent diabetic to reach a state of hyper-competence:

  • Absolute Self-Reliance: Realizing the doctor will not offer tailored, cutting-edge advice, the patient is forced to become their own primary clinician, data scientist, and endocrinologist.
  • Community Integration: To bypass institutional bottlenecks, the patient turns to decentralized open-source movements (such as the “We Are Not Waiting” DIY looping communities) to build or adjust their own automated insulin delivery systems.

4. The Resolution and Catharsis

In this dynamic, “defeating the villain” does not mean destroying the doctor; it means rendering their traditional authority obsolete.

Catharsis occurs when the patient returns to the clinic with flawless blood sugar lines, a perfect HbA1c, and minimal glycemic variability. The doctor is forced to look at undeniable data that contradicts their classical training. The “hero” wins by successfully seizing complete sovereignty over their own biology, leaving the tradition-bound gatekeeper to either evolve or remain a relic of an outdated system.

The point that, in this case, the “hero-villain” dynamic shifts from one of moral malice to one of competing paradigms. This concisely explains why I’ve often struggled with ambiguity when it comes to doctors. On one level I know that doctors pursue medicine as a social good yet still enable many bad clinical outcomes due to their reluctance to see all the data and be willing to change when justified. Of course I recognize there exists a difference between individual doctors and their professional agencies!

I find it interesting that a rigid doctor (or professional association) “inadvertently forces a highly competent diabetic to reach a state of hyper-competence.” In my case, whether it was an actual doctor or simply my perception of medical mainstream professional beliefs, it made no difference. “The ‘hero’ wins by successfully seizing complete sovereignty over their own biology, leaving the tradition-bound gatekeeper to either evolve or remain a relic of an outdated system.”

One last point I’d like to make I’ve seen nowhere else. Oftentimes, competent diabetics, disclaim that “they are not a doctor.” I concede the value of making this statement. What I propose as a way to also recognize the obvious competence of some diabetic patients, doctors should clearly remind their audience that they do not live with diabetes (unless they do!) and therefore cannot assume the authority and competence of a person who does.

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@Terry While I often double check any AI comments with my own knowledge and beliefs (and other documents or preponderance of seeming evidence I trust), the comments above are descriptive of my own experience and thoughts. Thanks for the post!

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The government is also struggling to define their “good vs evil” narrative. Every healthcare stakeholder is trying to define this. I think that the doctors struggle most of all. They are at the most risk. While I am aware that patient interests might require a Doctors vs Patient conflict in the future, I don’t worry about that. I think we have a definite upper hand.

When someone writes, “I am not a doctor,” they are resolving liability. This is a medical ethics thing. Not being a doctor provides you with freedom to speak openly. If you are a doctor, handing out medical advice on the internet, you have liability. I tell doctors constantly NOT to do this. Doctors venting on the internet (in the Reddit threads) is why we had a UHC CEO assassinated. The docs are irresponsible and unsophisticated in their advocacy work. That comes across. They are not self reflective, as a community. Their advocacy work comes across as naive. It reads as self serving and is often done for monetary gain. The government can see that.

YOU, alternativley, have a LOT of experience with digital advocacy. You have a lifetime of experience advocating for yourself in a medical context. Your motives, as a patient, are more pure than the doctors. They are not based on money. The government can see that too.

Just know that patients have the edge now.

Is there something you would like from medicine? We can get things now.

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In an ideal world, I’d like individual doctors as well as the doctors’ organizations (The American Diabetes Association, Breakthrough T1D [formerly JDRF], the American Association of Clinical Endocrinology [AACE], and others) to explicitly and formally recognize that the patient deserves sovereignty. Our experience of diabetes and its treatment is distinct, legitimate and different from the doctors.

In recent years, diabetes patients have demonstrated that they are co-equals as they push the envelope of diabetes treatment. Just consider what the open-source DIY #WeAreNotWaiting movement has produced. Doctors and their organizations should not be afraid to recognize this leadership demonstrated by the patient community. Patients are not subjects; they are partners!

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When I was diagnosed 36 years ago I was given a binder and attended several diabetes education classes. The following image is of a 2 page handout that has been how I deal with medical professionals. Maybe it’s because I am the captain and they are team members as this handout emphasized.

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I want functioning hardware and software across industry.

I don’t want the doctors to boss me around, the system to ‘rip me off,’ or for industry to cause me harm through incompetence and/or thoughtlessness.

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Me too, but there is a 3rd ware - wetware, us.

P.S. The nurses are great. They built an app to anonymously report unsafe staffing issues and incidences of substandard care.

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@CarlosLuis, I was diagnosed at a similar time as you and the metaphor about being the captain of my diabetes team was also used in some of the training I received. It was good info as it made me realize that I was the most critical member of my team yet I also held the most responsibility and the only one with “skin in the game.”

The doctors and other medical professionals, however, often did not treat me with equal gravity or respect. This feeling was strongest when I was in the hospital.

+1

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Agreed. I’d also be overjoyed if the staff would do blood pressure readings correctly. They never seem to follow the guidelines about how to measure for accurate readings, such as having you sit quietly for at least 5 minutes, making sure both your feet are flat on the floor, the bp cuff is on bare skin—not over a shirt sleeve—and your arm is resting on a desk. BP readings can read higher and be off by as much as 50 systolic if they don’t do this stuff accurately. Scary to think how many are misdiagnosed with high blood pressure.

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@CarlosLuis That’s a great cheat sheet! Would that more Endos and Docs would pass out something like this and comply with it! We all depend on Doc’s, Nurses, etc., initially for their “expert” advice while we learn the ropes of dealing with T1/T2/T?. I think “our” problems are: 1) Doc’s, Nurses, and other medical folks rely on training they received years ago; 2) most of “we” don’t break out of that “reliance” mode; and 3) so “we” rely on “old” training until we realize the advice we received and relied on isn’t accurate. This isn’t just a diabetes thing, its life in general until “we” educate ourselves and the docs/nurses/medical staff get updated on an admittedly wide and growing field of information.

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In my career as an electronic technician I would follow the way I was trained exactly. After a while I would make some changes that were imo slightly better. This has been my methods with my medical therapies. I trust my docs and they trust me.

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…and that trust is important!

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I wish that I had had the wherewithal to call my endo out on this dynamic last appointment. :sweat_smile: Maybe next time.

She said I was going low too much (6% below 70, but just 4% between 65-56 and 1% below 55), but luckily backed off when I confirmed I’m actively trying to get pregnant, and she confirmed my goals are in range for pregnancy.

She pointed out that my basal to bolus ratio was “off” and should be about 50/50… Mine is about 30/70 on average, in part because Control IQ suspends basal a lot. But then when she looked at my pump settings, she recommended changing my carb ratio for the afternoon from from 1:11 to 1:9 and correction ratio from 1:60 to 1:50… Both of which would result in more bolus insulin. She didn’t recommend any basal changes. :joy: I gave in and made those changes. But then I quickly changed them back two days later when my low TIR had jumped to 10%.

I miss my old endo who retired. My old one was very much, “How do you feel you’re doing? What are you struggling with?” and then focusing our conversation from there. :smiling_face_with_tear: She was very good at acknowledging that I’m the expert of my own diabetes, and asking how she can support me.

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This standard advice is unhelpful and dated, especially for someone on an AID. The algorithm modulates basal and in the case of Control-IQ, bolus insulin. The dividing line between basal and bolus insulin gets a little foggy. When you under-bolus a meal and let the algorithm add some basal insulin later, do you count that later “extra” basal dose as basal or bolus? The 50/50 basal/bolus target was an unrealistic target before AID algorithms and I think beyond unuseful when using an algorithm.

Doctors should recognize that people who pay attention and treat their insulin-treated diabetes as dynamic in nature, gains experience and expertise that quickly overwhelms a clinician’s. A good doctor gives the best advice when it remains more general. Strategic questions like, “Do you think that a stronger carb ratio in the afternoon might be a good change?” This more collaborative approach respects your 24/7 lived experience.

Plus, it recognizes that no doctor is available to step into the insulin-dosing game at any hour of the day or night! Funny that her judgement was altered when she discovered your interest in pregnancy. Are the more aggressive goals for pregnancy off-limits for the rest of us?

Good luck with your life goals and managing diabetes well!

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Some of us are just square pegs and don’t fit the round holes other’s try to fit us into, i.e. we aren’t “normal!” I’m pretty well dialed in on basal, ICR, ISF, usually TIR is above 88% and my night time BGs are usually pretty smooth. By standard formula’s with my TDD my ICR should be from 1:11.5 to 12.8 (depending on which formula), but I’m at 1:8.4 looking at going to 8.2 (possibly 8.0) AND may “have to” pre-bolus (eating has always been spontaneous and I don’t do all the cooking!). I sympathize with @Terry and @RachelMaraii! We’re all individuals and figuring out all the variables can be frustrating, particularly when you eat the same thing, treat the same way, and get different results…I’d say consistently, but its oxymoronic! Then nature sends us a curve ball, whether it’s hormones, sickness, kids, vacations, or whatever! We can only try our best, sometimes we’re on target, sometimes not; but we keep trying!

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@Lucy, That also drives me crazy.

You left out @Lucy asking question while taking BP. I must admit I am not experiencing this the last few years. Maybe I trained them by being unresponsive during the procedure :rofl:

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The worst is the U of MN dental students. Their automated, electronic BP cuffs are not calibrated or accurate. The best are the old fashioned street medics because they use manual cuffs. They are precise and accurate. When it matters, people use a manual cuff.

If I want an accurate BP, I stop in at the fire station and have them do it for free w/ a manual cuff. Those guys are just sitting around looking for something to do, most of the time. Emergency medicine knows how to do a proper BP.

In the weeks that followed me having a giant grand mal seizure, I would sometimes hit 180/90 and get super light headed. I have no idea why, but I would go directly to the fire station for a legitimate BP reading. What’s nice, also, is that those guys don’t freak out about BP = 180/90. They recognize it as concerning, but the dental students would summon the ER Doctors immediatly. They panic. But it’s hardware failure. That’s why I go to the students. It’s an opportunity to teach them. I look at them calmly and say, “That is not an accurate BP. If my BP was 220/100, I would be unconsious. Find a different machine and check again. An average BP for me is 125/80.” I’ve told nurses at the clinic that before.

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The worst BP measurement I ever had was done by a dental hygienist. She was using one of those wrist types while I am quite reclined. She laid my wrist over my heart. I suppose she was following directions, but those of for someone sitting up. My BP was something like 60/40. Without a comment she just noted that on my chart.:joy:

Recently I have had multiple doctor visits, just follow ups, not serious. Anyway all the CMTs used a manual sphygmomanometer. This was cardiology, endocrinology and PCP. Both the cardiologist and endo are pleased to see me because I am in good health despite being diabetic. My PCP was my friend from cycling before she became my doctor. I can remember on rides her wishing she had patients like me, a type 2 who actually does what is right.

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