Do your doctors/nurses/caregivers listen to you?

Diabetes Advocacy Self Advocacy
21

My doctor has a fabulous line something like: "Huh. I haven't seen that before, but you seem to know your stuff and it sounds like thats legit for you." I don't know why more physicians can't do that, or why such a phrase isn't given to them in medical school!

To be a little bit fair to the physicians we complain about all the time, they don't live with D, and how else are they supposed to know but what the textbook says? There have to be some generalities- food makes BG rise, insulin brings it down- or they could never even start to treat us! For certain some take it too far, but imagine you had 600 patients who each "knew" that their version defied logic but were absolutely certain thats how it worked for them. While I don't discount that some are extremely confident and using data-based facts (like with a CGM that runs true the first 24hrs as verified repeatedly with a glucometer over months of use), but I have met MANY D-peeps (both 1s and 2s) who are "sure" of something that doesn't hold under pressure- everyone from the old stubborn uninterested T2 who is "sure" apples make BG go down because she "can feel it"; to the equally stubborn 12yo T1 who "does better math than the Bolus Wizard" and refuses to use it instead opting for fuzzy math in his head for lunch every day and then complaining about running from 50 to 350 on a regular basis and how "brittle" he must be.

I do very much think many doctors have poor 'bedside manner', and sometimes a little empathy or just a "Really? I've never seen that, tell me why you think thats the case" would go a lot further than their arguing with us, but do keep in mind that probably 75% of the patients they see are generally unmotivated, uninterested, and maybe not intentionally making things up, but are more interested in saying random things that support their story than in using data to actually prove it.

22

I have a one word answer : PRIDE. They are the docs, they HAVE to know everything. Not for me, I would love it if my doc would say this or suggest that we both look into a problem or an idea,

23

I agree. Ultimately it IS our responsibility. They can tell us whatever they want but if we aren't comfortable or faithful in their information....we need to be able to do what we do...and feel calm and confident in what we are doing to care for ourselves.

24

I agree, sdkate. There is a god-complex that is drilled into their minds in medical school (and I say that having a brother who is a physician!). I have yet to meet a doctor who has seemed to show much in the way of humility. It's unfortunate, and creates a barrier between doctors and patients who do take their own health management seriously.

25

I heard a nurse say, last summer, "Diabetes is a disease that is perfectly controllable. I just don't like people making excuses for diabetics." It made me mad and I had a long conversation about it with an EMT who started venting to me about how much trouble his brother had encountered as a newly diagnosed diabetic. Our illness is simply not well understood. There's a lot of hostility towards diabetics within the community of emergency medicine. They can take that hostility and shove it up their a**. I vow to tell them how little they understand, from here on out, because its part of advocating for diabetics, like me.

26

There are many influences that feed the pervasive arrogance of HCPs. The god complex instilled in training certainly is one.

Another factor is just, well, statistical. For every patient who is conscientious, knowledgeable, and honest, there are dozens of the other kinds. So doctors tend to see people like us as a statistical blip, not significant. Their thought habits are formed in reaction to the great indifferent majority. (Another word for that is "stereotyping", which appears in every field of human behavior, unfortunately.)

HCPs also tend to employ "one size fits all" therapies. You'd think that if anyone in the world would understand that every physiology is unique and individual, they would. But it doesn't work that way. This one stumps me completely. I have no clue as to why it happens.

Finally -- and this one is applicable to diabetes in particular -- medical training really is not a good fit with what is needed to control this beast. Doctors are taught to attack and defeat acute illness (take this shot of penicillin and your pneumonia will be gone). They are not trained in constant day in, day out 24x7 management of chronic conditions -- which is what we do every day of our lives.

The bottom line, as has been said, is that you have to be your own expert. And decision maker. No one else knows your body like you do and no one else is there 24x7.

The last time I needed to change doctors, I did something I'd never done before: I shopped. I interviewed doctors before choosing to become a patient. One actually said, without prompting, "I don't know everything." When was the last time you heard a medical professional say that? He's now my PCP.

P.S. Two other factors not mentioned above: workload/time pressure, and simple laziness. It's just plain easier to do what you've already done 500 times before than to take the time and invest the effort to investigate each situation individually. Doctors are human beings and, consequently, just as subject to that temptation as everyone else.

27

Agreed with David that it makes sense to do the research and find someone who meets your needs.



My current endocrinologist also conducts research and teaches at the University connected with her practice. A blessing from day one. But before I was referred to her I had nearly given up looking. I’m so glad I didn’t.