Gastroparesis: Sometimes you know more than your doctor

(American) society still seems to have this thing where doctors are revered and assumed to know this amazing amount of knowledge about things no one else understands (except on tv). It started hundreds of years ago with licensing and membership requirements to be able to restrict people who wanted to be doctors and it still hangs on… even though medical care in this country isn’t as good as other similar countries. Obviously the licensing is important and needs to be required. It offers protection. Not many people understand they must be honest and open with their doctors. Not many people understand that doctors should be willing to respect their patients. Doctors are not omnipotent gods.

All that said, people with chronic illnesses can end up knowing more than their doctors… or anyone they interact with who is a “medical professional”. Yesterday I explained gastroparesis to two different people in a medical field. The first was a dentist… I can completely understand a dentist not knowing about a GI disease but it’s still weird to have to explain. (See above.)

The second person was a dietician. I explained what my GI tests had found and in front of me she turned around to her computer and googled Gastroparesis. She printed out information from one site and then went over it with me. She kept on even after I realized it was a print out I had at home that I’d read through. She ignored the things I said like:

Information on gastroparesis varies between sources.
There’s only so much my doctor can help with because some things I just have to figure out on my own.
I needed lifestyle changes, not just diet changes.
Gastroparesis makes exercises difficult and problems with pain and fatigue make exercise harder.

Mostly she was happy about my weight loss. The weight loss I’d achieved because the gastroparesis limits how many calories I can consume at one sitting/in a day. One she was so happy was because she has to follow FDA guidelines. Guidelines that are for healthy people people not like me… people without chronic diseases that have no cure and aren’t caused by obesity. The only thing the dietician really helped me with yesterday was a little bit more understanding on how to approach monitoring my calorie intake – and how much fat, protein and carbs I need. Now that I think about it the only reason why I want to see her again is to see her response based on my additional weight loss…. I still can’t eat as much as my recommended calorie count for a day, so my weight loss will continue. (Hopefully I won’t add it back on later.)

The medical field in this country needs to change, but because our government’s views on medical care access are based on how much people deserve instead of recognizing that medical care access is a human right, we still have very far to go. This should also include changing the relationship between doctor and patient. People need to learn to advocate for themselves, which isn’t the same as arguing with their doctor that WebMD knows more. We need to learn to value our health and know that sometimes lifestyle changes are necessary.

Author: Histamine Queen

Nerd, wife, knitter, writer, cat mom, and comic book reader w/masters of science in Applied Sociology.

I have histamine intolerance, lots of food allergies and sensitivities – including gluten. And I have multiple sclerosis fibromyalgia, asthma, drug allergies, and migraines. Basically, I have a collection of invisible chronic health problems. I don’t just survive these things, but sometimes I do hate them because I see doctors so often that keeping healthy and staying full time employed is currently impossible.

3 thoughts on “Gastroparesis: Sometimes you know more than your doctor”

  1. I hate when I’m in an appointment and I know more than my doctor does. Especially because I have to pay so much for their time and “expertise.”

    1. Especially when you don’t acknowledge it and act like you haven’t noticed…. Hello! I’m more intelligent than that!

  2. Such a familiar story. I’ve decided that I no longer go to doctors for answers. I go because I need them to do something, a test, prescribe a drug, etc. I find that if I go in with a ‘I need this’, but carefully convincing them that it was their idea. With a few exceptions. I’ve had two specialists open with the line “What can I do for you?” Guess what- they are the only specialists i still see. They are very happy to have me say “I need x.”. They always do their research to make sure it makes sense, its safe, etc., and usually they give me what I want. Once or twice, they’ve disagreed. And I always end up agreeing with them- they sometimes have information I don’t. Fortunately, both of them are very willing to say that people with rare, chronic illnesses, are often more knowledgeable than their doctors. Physicians like that are rare though- especially specialists, who seem to think those extra letters somehow makes them smarter. They’ve done studies- most physicians IQ is only slightly above normal. True geniuses can’t function within the cinstraints of medicine. Think of Dr. House- he was constantly breaking the rules, doing things creatively. In the real world we can’t allow doctors to be like that- except when you have a rare condition…then, that’s exactly what you need. I think that hospitals/health regions should create Rare Disease Teams- made up of people who can think outside the box, rapidly assimilate information, and work with the patient in constant ‘experiment’ mode.

Comments are closed.