Have you ever shown up for your doctor’s appointment armed with articles you downloaded from the internet? Did you note your doctor’s reaction? A roll of the eyes, a muffled sigh, a politely contrived smile. It doesn’t stop me. I’m determined to know what questions to ask because I have learned that if I don’t ask, they’re not offering. My sense is that many doctors idea of the ideal patient is the one that follows doctors orders, no questions asked.
Like when I was “floxed” by Fluoroquinolone antibiotics. There are an abundance of online articles detailing other patient experiences and adverse reactions to the class of drugs but despite that, my doctor was comfortable insisting over the phone (ie. without seeing me) that I wasn’t one of those patients. I insisted on an office visit, and once he saw my blown up Achilles tendons, he was quick to acknowledge that I was having an adverse reaction, that I was indeed “floxed.”
Since then, I am a relentless Internet researcher on every medical condition that either comes my way or my friends’ of family members’ ways. I show up for doctor’s appointments with well-researched questions and insist on non-dismissive answers. I’m sure I’ve taken it to an extreme but I say, “Fool me once, shame on you, fool me twice, shame on me.”
I was recently diagnosed with a pancreatic cyst - (side branch IPMN, to be specific). When the rest of America has been sleeping, I’ve been reading every online article and patient story available on the subject. I’ve had MRI’s, MRCP’s, 3D CT Scans, PET scans, EUS’s - you name it - this cyst has been looked at from every angle and modality possible. I always insist that the doc fax me the results so I can see them for myself. I then dive in and try to become my own expert. There are often foreign terms that sound scary, but with online medical dictionaries at my fingertips, I work through them word-by-word. I’m clearly in territory that I don’t belong and often causing myself extreme anxiety, but not knowing and trusting others to make decisions for me also makes me anxious . I feel strongly about the importance of being an informed patient, but without a background in medicine, I realize that I may be misinterpreting the information.
Lesson learned? All things in moderation - including online patient medical research. I know that’s a lesson my doctors would approve of.
Do you use online research to inform your discussions with and questions to your doctor? How does your doctor react? Have you ever caught or diagnosed something through internet research that your doctor had missed or dismissed?
Susan Beausang, 4Women.com
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Hello Sysy92,
Thanks for sharing. Like everything, I think there is a balanced approach to strive for. I don't want to get in the mindset that my internet research substitutes for my doctor's input (which happens easily enough), but do want to be as informed and actively involved in my own care as possible. And I don't find doctors inviting that kind of patient participation. It certainly doesn't fit well into the rush-rush type of appointment that many doctors maintain.
Good for you for insisting upon the attention that resulted in accurately diagnosing your Reynaud's.
I wish you the best,
September 14, 2011 - 8:42amSusan
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Great article!
September 14, 2011 - 8:05amI do use the internet to find out things that maybe the doctor has missed or if I didn't quite understand a condition she explained to me. I have gone in there prepared, and I have caught something she didn't catch right away. I went in there thinking I had Raynaud's phenomenon in my feet..at first she sort of rolled her eyes, and then she examined me, did a few tests..and well I was right (to her surprise). Though we still don't know what is exactly causing it, at least we know what it is and how to help it (it can be pretty painful).
It's our bodies, we have the right to protect it. Even if somtimes we are wrong, it's better than having some sort of condition, then having the doctors dismiss it..then having no knowledge about the condition and possibly getting sicker. I think doing research about your health is vital.
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Hi Susan - Searching online for health information can be the best - or worst - thing people can do. That's why I wrote a book to guide people and help them reach accurate, reliable online resources for support during a medical crisis. "The Web-Savvy Patient" details my own experience as a cancer patient who enrolled in a clinical trial that saved my life, has the stories of some 30 patients who became "web-savvy" for various medical conditions, and provides actionable steps and tools that can be used by anyone dealing with a serious medical condition. I think you would find it beneficial for yourself and those you deal with in your advocacy work. You can learn more at the book's website. Wishing you the best, Andrew
September 14, 2011 - 7:55amThis Comment
Hello Andrew,
Sound very interesting. Thanks for letting me know about the book. I hope to check it out.
All the best,
September 14, 2011 - 8:35amSusan
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