When Patients Know More Than Doctors

I recently read an article in The New York Times that really spoke to me and would apply to so many of my own patients. “When the Diagnosis Is Rare, Parents May Know More Than Professionals,” by David Wheeler, highlights a family who struggles to find answers to their young child’s medical condition. For two years, the parents researched her symptoms, pursued different physicians and became her strongest advocate. Eventually, their child was diagnosed with a rare disease, Infantile Neuroaxonal Dystrophy (INAD).

Guest Blog

By Jennifer Bybel Lown,  Nurse Practitioner

Dr. Daniel Cameron & Associates

Woman searching for Lyme disease information on internet.

Patients, who can’t find relief from symptoms, often turn to the Internet to find answers.

While Lyme disease isn’t necessarily rare, it is a less understood disease, surrounded by conflicting information. And, one in which, all too frequently, family members seem to be more knowledgeable than medical professionals.

We recently treated a patient who had been sick for over a year. At just fourteen years of age, other physicians had suggested that the pains and difficulty walking she was complaining of were due to anxiety. Her mother refused to accept this, and continued searching. After finding a physician who specializes in treating Lyme disease, she was diagnosed with Bartonella and Babesia, is currently being treated and is doing much better. She no longer has any difficulty walking and has been able to attend school again this year.

It is often so very, very hard to be either the spouse, parent, or other caregiver of a loved one suffering from Lyme disease. In the years that I’ve been practicing with Dr. Cameron, I’ve worked with many patients and families who are knowledgeable about their disease process. They have been tireless advocates, fighting to understand their symptoms and determined to get better.

With that said, there is so much information online that is often unhelpful and not productive. I recommend to patients to evaluate the source of what they’re reading (which is what doctors and nurses are taught to do in school). What is the bias of the author? Are they trying to sell you anything? Is the source a patient, whose information is understandably biased by their own experiences? Is it a company pushing a product? It’s fine to review all the information, but always understand where it’s coming from.

It’s also important to acknowledge your own biases, and to know what is appropriate for you. Many of my patients find that they are unable to read blogs from others who have their illness, because merely reading about someone else’s suffering provokes anxiety in them. Others take comfort in reading stories similar to their own. It is important to know what is helpful to you, and what is harmful.

We always encourage a discussion regarding treatment in our office. Medical decisions are supposed to be made with the patient’s input and understanding of all the options available. We encourage our patients to be as informed as possible about their disease process and to bring their questions and ideas to every appointment.

To read the complete New York Times article, click below.


1 Reply to "When Patients Know More Than Doctors"

  • Leslie Snipes
    11/19/2014 (1:55 pm)

    But when can we expect doctors to begin to recognize and deal with their own biases? Last year, my son was treated as if he were in a psychotic state for nearly 2 weeks. When I finally pried records from the hospital, I found a CT indicating brain lesions and recommending a follow up MRI which had never been done. In the end, he was diagnosed with a “rare” movement disorder caused by those lesions they ignored on his day of admission. I realized a long time ago that “rare” disease merely means rarely diagnosed and that seems to be so because doctors are quick to write off patients as psych cases. Are they lazy, incompetent, or is there a bias causing them to commit mass malpractice via attributing symptoms to psych issues without even nominal investigation?

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