I'm very happy to come on board as a new IBD expert. As an RN, health educator, and medical writer, I guess, on paper, I'm a credible enough "expert." But, to tell you the truth, what turned my personal and professional interest to the area of inflammatory bowel disease--in particular, pediatric IBD--is that three of my four children (my boys, now ages 18, 23, and 30 years), have IBD.
My youngest son was the first of his brothers to be diagnosed; he was ten years old.
The first two boys have Crohn's disease, and the third has ulcerative colitis.
Very often, people ask, "How do you do it?" "How does your family cope? "What's it been like?" Ah! The answers (if there truly are succinct answers...) are stories for another day--or days.
But, today alone, I received phone calls from two mothers of children newly diagnosed with Crohn's; one child age five, the other, age ten. The women had been referred to me, because they were reaching out for help and support, at the frightening beginning of a journey known too well to too many of us.
So, I thought I'd share with all of you, one of the things I thought was important to share with them: the importance of concise and proactive communication with your, or your child's, provider.
Remember back when you were a kid in school, and you thought you sort of knew the answer to the teacher’s question—then again, you sort of didn’t? But, you were too embarrassed to raise your hand and ask for clarification in front of all the other kids; hey, maybe you’d look stupid! So, you didn’t ask for help, and you failed the next pop quiz. If only you’d have been smart enough to have risked looking stupid…
Now that you’re all grown up, is it still that way for you, about your own health? Do you sometimes leave the doctor’s office thinking, “Gee; I should have asked about that…” Or, “I wish she would have explained that better.” Or even, “Did I miss something, or did he forget to tell me when to stop taking those pills?”
In his insightful and candid book, “Where Doctors Go Wrong,” which has been described as “must reading for every physician who cares about patients, and every patient who cares about good care,” Jerome Groopman, M.D., says, “patients can prompt broader, sharper, and less prejudiced thinking by asking doctors open ended questions, and learning to identify some of their common thinking mistakes.”
Communication matters. It’s not rocket science, yet, until fairly recently, the art was all but overlooked in the training of medical providers. Patients have always known that communication matters, and, so do malpractice attorneys: it is often poor communication in the face of a bad medical outcome that results in a lawsuit by a patient.
Poor communication between patient and provider often reduces the accuracy of a diagnosis. It’s true. Research shows that, on average, patients are given just 18 seconds to spit out the story of their illness before being cut off.
