How Do You Communicate with Doctors? - I have problems

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I am pretty convinced that my Aspergers has caused me mucho problems with doctors. I think my lack of eye contact and my voice inflection when describing problems or pain leaves them thinking I am a pain pill seeker or it is a minor issue when it is a major issue. Plus - am I the only one who has problems with the descriptions of pain they always ask - sharp?, dull?, scale of 1-10? I don't know I just know my nerves are screaming to my brain that it hurts.

I have tried writing up a list of what I want to get out of the appointment, but it does not help.

I actually ended up in a hospital for 6 days on IV antibiotics, because the doctor I told my foot hurt and there was something seriously wrong with it after my cat bit me deep in my big toe, did not think that I needed anything done. I think he thought I wanted pain pills. Now when I get a cat bite - I demand antibiotics ASAP.

Any great suggestions out there?

i hope you can find yourself a doctor who is more on your wavelength, and more able to accomodate your preferred means of communication, i.e., written.

Try writing it is as a letter rather than a list i.e

Dear Dr X,

My foot has been in pain and swollen for several days after being bitten by the cat. On a pain scale of 1 to 10, it is x. I think i may be infected etc.

I have done this and its been a great help.

I use this pain chart:

0 - Pain Free

1 - Very minor annoyance - occasional minor twinges. No medication needed.

2 - Minor Annoyance - occasional strong twinges. No medication needed.

3 - Annoying enough to be distracting. Mild painkillers take care of it. (Aspirin, Ibuprofen.)

4 - Can be ignored if you are really involved in your work, but still distracting. Mild painkillers remove pain for 3-4 hours.

5 - Can't be ignored for more than 30 minutes. Mild painkillers ameliorate pain for 3-4 hours.

6 - Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.

8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you pass out.

Copyright © 1995, 1996 , All Rights Reserved. Right to copy with attribution freely granted. The information contained herein written and copyright by andi@basilisk-49.Eng.Sun.COM (Andrea Mankoski)


Try printing off a copy and giving it to him. It could help you

Sometimes I write a letter to my doctor and just hand it to him without saying anything. It seems to help on more complex issues. As far as pills go there is also a surgical procedure called a spinal bloc where they give your spinal cord a shot that will numb that region of your body but does not render it useless either. Although the numbing may feel weird...it is better than screaming nerves and it lasts for 3-4 months and has no risk of dependancy. Alot of people dont know about this option, but it works well from what I hear.

I have a great respect for the education required, and the responsibility which goes along with being a doctor. With that said, I get ULTRA-frustrated with how doctors are often very prejudiced and closed-minded to any ideas which cannot be verified verbatim in a medical textbook. They seem programmed to listen to 2% of what a patient says, and they will not budge, once they have an opinion or belief. That's not limited to patients with Asperger's.

Case in point: I have hypoaldosteronism, which is a hormone problem similar to diabetes, in that it throws off insulin production levels, and causes many of the same symptoms as diabetes. I had gone to a dozen doctors over the last 25 years seeking answers to why I crave gallons and gallons of water all day & all night, and I have to pee every 15 minutes (sometimes literally every 15 minutes). Also my blood pressure was deadly-high (measured at 240/160 at one time when I was age 38 ), triglycerides at over 500, and I was tired all the time, etc. EVERY DOGGONE TIME I asked for help, the doctors would say "Stop eating fried foods, don't smoke or drink, don't eat so much candy and cake, and get some exercise!" I wanted to just lay a fist right in the kisser of each one of those doctors who said that. Why? Because I never eat ANY fried foods, NO candy (I don't even like sugar; it has a bad aftertaste), and I drink only water and I certainly don't smoke... and my diet consists of the most healthy foods we know of. Seldom any red meat, and cholesterol-free egg whites and plain oat meal for breakfast, etc. I am a bodybuilder, and my body fat is a 4.8%, which is unheard of for anyone besides college track athletes. I earned it, and I don't like some quack telling me to eat less fat (INSINUATING THAT THE ILLNESS IS MY FAULT OR SOMETHING). To add insult to injury, every doctor is convinced I'm lying, and that I sit around all day eating cheeseburgers and fries, so they send me for an arterial scan, and OF COURSE it comes back perfect results... Then they just scratch their heads and say "I don't know WHY you have all this trouble, so I"ll give you a pill to fix your blood pressure and cholesterol". They NEVER wanted to look for the cause!! !! !! !! !! ! So my wife and I did a lot of research, and got suspicious and realized I matched all the symptoms for hypoaldosteronism... We went to an endocrinologist (hormone specialist MD), and she found the problem immediately. That was not and is not covered by any insurance, so we have to pay cash.

The communications walls which are solid brick, and seem to be built between every doctor and every patient, are just one problem with the practice of medicine. The whole system is broken, and needs to be re-thought from the fundamentals up.

Charles

kx250rider

Good post. Glad you got to the bottom of the problem, but infuriating you had to bypass the docs who should have had their eyes open to other options than the obvious. That's the whole point of med school - to give more training than we have just using self-directed research, but unless they sit and listen to us, and ask leading questions to do a proper differential diagnosis, then it's all too easy to miss the real problem. It's more work for them, but if it's messing up your life and health, it's the most important thing in the world to you.

The system seems to be set up as a Russian Roulette game - if you get a good clinician who listens, has the experience to know what to look out for, what to ask and knows when the limit of their expertise is reached & it's time for a second opinion or referral, then great. Even better if they tell you what other things to watch out for that mean you should come back to them.

If they're not so good, or just the sort of personality that is at odds with yours, then communication is a blank wall. They may not listen properly or latch onto some small piece of information that isn't the major issue, then run with that to the exclusion of all the other contrary evidence you may suggest, or just brush off concerns.

I want to speak to a doctor and be believed - some people are very credible, others struggle to get their voice heard, truth does not solely reside with the former. Unfortunately medical consults, like a lot in life, is actually affected by personality and variable factors such as how forceful or credible you appear, rather than simply having a need and wanting to discuss facts & feelings. If you don't feel you're getting anywhere, persevere a couple of times but if no result, change doctors.

When I was trying to figure out what was going on with some cognitive problems that had gotten to where I could not continue school or work, I also ran into physicians who would make some trite assumption and stop listening. Some said, "you're not getting Alzheimer's." I never said to them that I thought I was getting Alzheimer's. I clearly (from my written notes, in order to be as accurate as possible), explained the symptoms and what they were interfering with, and then asked them what they thought was going on. All they could seem to do was assume it was all made up and a bid for 'attention' (I guess). Eventually, on my own, I scheduled neuropsychological testing with a specialist, and that showed that something was in fact going on and gave it name/label. (Had to pay $1200 out of pocket because I couldn't get a referral.)

From that and other things my impression is that doctors are the most trained & prepared for the most common things they're going to see in practice. (Especially GP's.) So, they're primed to see heart disease (for the most common reasons: bad diet, sedentary, etc.), high blood pressure (the most common reasons), diabetes, arthritis, etc. etc. So, if you have something that is rare (and not directly fatal) and mimics the symptoms of something more common, then it seems that their mental flowchart is likely to funnel you off into the wrong box. (It's amazing even to me that they could do that while having a body builder sitting right in front of them, though. Wow.)

It's understandable, but to say that it's frustrating (not to mention potentially dangerous/deleterious) is an understatement.


One of my special projects once was learning about Addison's disease (I don't have it, BTW). In the course of that research I found out that doctors typically only get one-half of a one lecture on the condition, because it is so rare in humans. Dogs, OTOH, because of a genetic bottleneck long ago, have much higher rates of adrenocortical failure. So, the average vetranarian (who works with dogs) is likely to be good at spotting it and treating it.