Speak Up

Nobody who knows me would believe that I ever hesitate to say exactly what I think, but around doctors I’ve always been tongue-tied.  Partly, it could be the situation:  shivering in a paper gown in front of a relative stranger doesn’t provide optimal conditions for a friendly conversation.  Another aspect is that I tend to believe that if you hire an expert, you should follow their recommendations without causing them a lot of grief.  Then there’s the “just do what you’re told and don’t question authorities” phenomenon (again, those who know me are laughing at the suggestion that I might think such a thing).

If there’s any advantage to being diagnosed with a chronic disease, it’s that I’m learning to talk to medical people instead of silently accepting everything they say.  Medblogs are a big part of that.  I discovered writings by doctors who don’t seem above it all; they seem like nice people who listen to patients and use the stories they hear to make people’s lives better.  Musings of a Distractible Mind is the first blog I found, followed by Notes From the Country Doctor, A Country Doctor Writes, and Whitecoat’s Call Room.

Before medblogs, I hadn’t know that there are people who became doctors to help people.  I thought the profession was selected based on prestige and potential income.  Before reading medblogs, it hadn’t occurred to me before that a doctor might want more than the bare-bones information written on a questionnaire.  The things I’ve discovered could fill a book, but the point pertinent to this post (before I get even farther off track) is that based on the medblogs I read (those cited above, plus a number of others), I’ve discovered that it’s okay to speak up.

Example #1

The first rheumy just wasn’t working out for me (details of which I won’t go into again here).  I dreaded every appointment.  Finally I told my PCP that I was thinking of looking for a new rheumatologist.  That probably sounds like a small thing, but for me, it was huge.  In less than a minute my PCP had written a new referral – and this doctor is a much better fit for me.  All I had to do was speak up.

Example #2

When my (new) rheumy was reviewing my meds last fall, pondering my response and whether it was time to try something different, she said, “It looks like you’ve been taking this since May…”  I spoke up – new concept!  Actually, I’d been taking it for almost two years.  Knowing that made a difference in her treatment plan.

Example #3

PT, not MD.  Most of my exercises are supposed to be done with 20-30 reps.  One of them is extremely difficult (I’m lucky to do ten), and another is super easy (I’m still going strong at sixty but stop because it’s so boring).  Before RA I would have just done 20 reps of each and gone on to the next thing.  Now, I dare speak. 

Me: How many did you want me to do of these?
PT:  20 or stop sooner if you get tired.
Me: I could do these all day.

I never would have said anything before.  I would’ve gone home, checked what it says on the printed exercise list he gave me, and followed instructions to the letter (persisting in an exercise that was useless).  However, given my feedback, the therapist modified the exercise so that it actually helped.

I’ve been pondering…  Have I had doctors do things that make it harder/easier to talk to them? 

Next post will answer that question.

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8 thoughts on “Speak Up

  1. Your posts about keeping records of your RA, writing down questions for your doc and encouraging self-advocacy have been so helpful to me, WarmSocks. I was also one of those patients who just did as the doctor said and rarely had meaningful questions. I certainly never argued with him!

    I haven’t had to argue with my current rheumatologist, either — he’s been very good about answering questions and respecting what I say. Nevertheless, without that list of questions, I’d still be in the dark about a lot of things regarding my RA. So thank you! You’ve had a big part in helping me speak out — your blogroll even got me reading doc blogs, which have been real eye openers.

    Hope this finds you feeling good and your shoulder keeping it down to a dull roar… ;)

    • Thank you, Wren. I blog in hopes of helping others with some of the stuff I’m learning. At least that was the intent; I think that I benefit from others more than I’ve been able to contribute. I never anticipated the friendships that I value so very much.

  2. Good for you! It is sometimes hard to take charge because we want to feel like the expert knows all but how could they possibly know if we don’t tell them?

    I saw my rheumatologist the other day. I am going to need to switch. I already felt like she had no idea who I was but then I filled out a form at the beginning and it asked a bunch of questions that I answered in detail. I had a bunch of issues/questions since my last appointment. She took the paper from me, didn’t even glance at it and then proceeded to tell me to continue what I was doing and see her in 6 months.

    When I questioned her about the form, she glanced at it, said it looked good and left the room. What????

    My point is that even just a few years ago I would have thought she knew what she was doing and trusted that she looked at the form well enough and all was good. Now I feel like if I don’t make sure I am being taken care of the right way, whatever happens is my fault for not questioning or switching.

    I guess that is one good thing this has taught both of us? Although I think I’d rather have not learned it and been completely healthy.

    • :O It’s so hard finding a new doctor. &$*%
      I’m sorry. It’s appalling that a doc would dismiss your concerns like that. Doesn’t really sound like it was just an off-day for her, either :(

      And I completely agree; I’d rather be healthy and not need to know all this stuff.

  3. I really think my medical experiences have made me a more assertive person. It’s so important to ask for what you need and make sure you’re understood.

    Thanks for another helpful post!

    • That’s a new concept:
      Tired of being treated like a doormat? Sign up NOW. You, too, can use your very own, incurable, chronic illness as a crash course in assertiveness training! Clinically proven to be the most effective training method available! Don’t wait! Call today! Illnesses are standing by!

      Sorry, maybe I’m a little punchy this morning :D
      We’ve gotta find ways to look on the bright side.

  4. Pingback: more on speaking up « ∞ itis

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