Patients’ Depth of Knowledge and Doctors’ Illusion of Control

Ever walked away crazy with frustration after yet another appointment with your doctor doesn’t resolve anything?

There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.

Ever been pissed off at your kids’ pediatricians and pulmonologists because of their attitudes and demeanor?

You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk.

Ever wonder why it feels like you sometimes know more about this chronic lung disease than the person standing in front of you who not only collects your co-pay but also went to freaking medical school?

[Y]ou possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge. . . .

Want to know where I found these quotes?

Check out Dr. Rob’s open letter to patients with chronic disease. In it, Dr. Rob makes the case for positive, productive doctor-patient relationships without implying that a little patient knowledge is a bad thing and by outlining as thorough and generous an explanation behind thorny appointments as I’ve found yet. Go read it; see what you think.

(Via Terri Mauro on Twitter.)

12 responses to “Patients’ Depth of Knowledge and Doctors’ Illusion of Control”

  1. Rob says:

    Thanks for the citation. It is truly an illusion of control we have, and sometimes we do more just by commiserating with folks who have chronic illness – it’s just nice to have someone understand that your situation actually is difficult. People with chronic illness (or with kids having the same) make other people uncomfortable because they don’t understand. One of the jobs of the doc is to understand.

    Hopefully we can help too, but this post was for those we can’t.

    Again, thanks.

  2. Love the post title. Off to read the linky.


  3. Sara C. says:

    “How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?” Spot on quote. Mariella has to be seriously suffering to NOT answer that question as “fine” even though she hasn’t slept or eaten in a week, because she’s coughing and her belly hurts. It’s status quo for her. so in her mind, she’s fine.

    That is a fabulous article. In reading through the “rules” I think I do ok with them…By this point in time, her primary specialists know me well enough, and I know them well enough that it’s OK for me to say “I read about this, can we try it” or “my friend suggested this, what do you think” Maybe it’s because I don’t demand, I always ask what they think. When I meet a new doctor, I try not to jump in with both feet…I think sometimes, I almost appear to be sheepish, because I wait for questions, rather than just rattle off her history.

    Good fine, Amy, I think I’m going to bookmark it.

  4. Sarah says:

    This is a great article… I see that frustration in my Dad when he can’t fix someone (especially me or my sister – he’s a doctor, and having two kids who are chronically ill takes a big toll on him), and in my doctor whenever I see her. I know some patients might disagree with me on this point, but I’d like to say that if you’re frustrated for a patient, let them know… One thing I love about my current doctor is that she will show it when she’s frustrated on my behalf. I think it strengthens our doctor-patient relationship, for me to see a bit of her humanity. It also helps me be a bit more patient about referrals/tests/etc, when I know that she’s every bit as impatient as I am.

  5. MC says:

    Amy, great find, and Rob, great letter.

    Sara, in regards to “normal”, for people with a chronic illness, when you’ve been having problems or pain or “abnormal” for awhile, it gets to the point where you forget how much better you could be feeling. And when you’re feeling great for some time, you quickly forget what feeling awful is like. My mom and I have discussed this more than once, and she totally understands as she has fibromyalgia.

    And the other thing that I know others have said, is that when asked (even by their doctor) how they’re doing, they have to fight hard to tell them the truth and say how they’re really been feeling, not that they’re fine. I hate lying, but when it comes to health, especially if I’m in no mood to talk about it, I’m prone to say “I’m fine.” or “I’m ok” and most people think that I’m doing wonderfully and I don’t have to say anything more and they can go on living as if everything’s fine and great.

  6. Amy says:

    Rob–Thanks so much for stopping by, leaving a comment, and writing this post in the first place. It’s an amazing piece, and I think it will provide helpful insight for a lot of my readers. (It sure did for me.)

    Everyone–Go read the whole thing if you haven’t yet, and if you have a blog yourself, spread the word and pass it around and/or tweet about it. Let’s share a little knowledge and information today, shall we?

  7. I linked to it! It was a great read. Thanks for highlighting it.


  8. Elisheva says:

    Oh wow! Yeah exactly. And here I am thinking my new pulmonologist is an idiot. At least I’m not alone.

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