Tuesday, February 24, 2009

Building A Better Me, Part 1: Being A “Smart Patient” Matters*

Wham! From the very first moment of a health crisis, you’re unprepared and not in control […]” (170).

Welcome to my first blog series. I’ve been on a self-improvement kick lately, so I’ll be exploring a variety of issues, some which deal specifically with chronic illness, others that do not. I hope that you find some of these posts useful for your own life, and that you’ll humor me as I do some rather public self-exploration.

When I embarked on this journey of self-discovery, which basically meant scouring the shelves for books related to various aspects of self-improvement, and devouring them as quickly as possible, the one thing I promised myself is that I would try and stick to looking towards the experts for advice on the things in my life I was looking to improve.

That said, I wasn’t too impressed with myself that I scored a 19 out of 40 on the “Smart Patient” Quiz. On the other hand, though, I wasn’t all that surprised. When you’re not expecting more than annual visits to the doctor and a few minor ailments here and there, when you’re hit with a chronic illness, you’re thrown feet first into the medical “ocean”. And honestly, it’s not always that easy to keep up. It’s literally sink or swim…

While I don’t pride myself on being enamored of Oprah’s cronies, I’ll admit that “You: The Smart Patient” by Drs. Michael Roizen and Mehmet Oz was very useful and user friendly.

They say, “[…] our patient really plays a triple role, he or she is our partner and our chief, and also the very citizen we’re protecting and serving” (13). I really like this analogy because a lot of times, the doctor-patient relationship can be very unbalanced. It’s nice to hear doctors acknowledge that we are their business, front and center. However, much of the onus is still on us, the patients… “Most patients don’t do a great job of communicating with their doctors […]” (41).

In my opinion, these are the top 10 tips that I gleaned from the book:

1. Ask questions of your doctor. “Sweat the small stuff.” In other words, don’t lay low. “Speak up!”

2. Know your family history.
3. Find a doctor who is experienced, but young enough to see you through the majority of care over your lifetime (Not sure this is one is doable for some us in the young and chronically ill category).
4. Explore cutting edge techniques, the best doctors, and hospitals (“size matters”).
5. The pharmacist is a great resource for medical information.
6. Always get a second opinion (you shouldn’t feel guilty about doing so).
7. Appoint a health advocate.
8. Don’t believe everything you read on the Internet.
9. Even though you are a patient, you have rights. So use them or lose them.
10. Be skeptical about and cautious of alternative medicine therapies and remedies. That doesn’t mean you shouldn’t utilize them, just always make sure to consult your doctor in order to avoid any interactions with medications you are already taking.

And remember, all of this is the advice for the (currently) healthy folks… Means some of us “sickos” have a lot to learn…

Overall, “You: The Smart Patient” is a good resource to look things up in as needed, but I don’t recommend you read it cover-to-cover like I did, and I don’t feel it is particularly useful for chronically ill people (especially those of us new to this camp). For instance, one suggestion is that you take all of your actual medication bottles to doctor’s appointments. Really? You’re lucky that I take my medication, so don’t push your luck…

The main thing that this book emphasizes, which I think is critically important, is that we have to be our own health advocates. While it’s also good to have someone appointed as your health advocate in case you can’t make decisions for yourself, we are the keepers of ourselves. We have to be the first line of defense in finding the right doctors and providing those on our medical team with the information they need to help us get the best care possible.

There are so really useful handouts in the book, though, that you can use to keep track of all of your health and medical information. You can find versions of these for free at
www.realage.com.

*My friends have had it with me, but they’re going to have to hang in a little longer. They can no longer ask for book suggestions because all I read are patient narratives and books for my self-improvement “project.”

*****

(Roizen, Michael, and Mehmet Oz. You: The Smart Patient. New York: Free Press, 2006.)

4 comments:

  1. I think I am a smart patient, overall. But I found that some doctors make my job very much harder. It might be the country and culture I live in. But while I have a primary care doctor who is very good and happy to answer my questions, the specialist visits have been very frustrating because they want to speak "simply" and avoid any medical terminology. As in, they will keep saying "inflammatory condition" instead of "ankylosing spondylitis", "lowest level of the spine" instead of "L5-S1" etc. No matter how many times I will use correct medical terms, doesn't seem to help. I wish I knew the way to fix it, but I seem to have had very little luck so far.

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  2. I agree with you, as in my experience, specialists are quite difficult to deal with, no matter how hard you try to be a smart patient. I'm sure many other chronically ill people feel that way, as well.

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  3. Congrats on the series Leslie. I have been doing one on my blog the past two weeks and have gotten a good response. I am sure you will as well. I have the book you are referring to and I agree with your assessment. I think the chronically ill will always have a tougher time with doctors because we have so much more interaction with them than healthy folks.

    As to your first commenter, you are not alone!

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  4. Hi there ...

    I am hoping you can help me rally all the "lupus troops."

    March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus.

    To learn all the easy things you can do from the comfort of your home, please go to http://lfa-inc.blogspot.com/2009/02/even-if-you-cannot-be-in-dc-for-lfas.html

    To take it a step further, if you're willing to do so, I'd really appreciate it you would consider posting this information (what you find at the link to my blog) on your blog, and letting all your friends and family know how important this is to the lupus community.

    If you have any questions, feel free to email me at davis@lupus.org.

    Thanks for your help.

    All the best, Wick

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