An unusual thing happened during a visit to my doctor’s office this week. I was there because my allergies—sinus headaches, weepy eyes, congestion—having gotten noticeably worse the last six months. My doctor and I had a chat about what supplements I was taking while she tested me for various pollens, and during this very relaxed friendly conversation I learned that one of the supplements—as well as the particular pollens I was having such a bad reaction to—is too estrogen-heavy for my system. I say for my system, because I am a specific, unique case, and my doctor knows this. When she told me about the estrogens, I laughed and said, “It always circles round back to my endometriosis, doesn’t it?” to which she replied, “I was going to say it, but I knew you’d say it first.”

It has taken me 20 years and just as many medical practitioners to find a physician that will have that sort of conversation with me—a conversation that takes into account her expertise and my personal anecdotes and habits. A stunting of the “conversation” between doctors and patients is the leading cause of millions of women being diagnosed with my particular condition—endometriosis—ten years later than they should be. It is the cause of an average of ten years of chronic pain, infertility, a breakdown of the intestinal tract, an increased risk of deadly cancers, emotional suffering, and the loss of income (in the US, with 7.6 million women affected, the estimated cost is just over $80 billion per year).

“Patient engagement”—the practice of taking a patient’s experience seriously and applying it to medical science—is what is known as a soft science: something that is hard to measure and determine value from. But as Eric Wicklund points out recently in mHealthNews it is vital “that healthcare providers see the value in what their patients are thinking and feeling.”

Healthcare fails patients when it focuses only on catastrophic events and illnesses. This failure may affect female patients even more than male patients due to a woman’s complex reproductive system. Women experience more of what society thinks of as little troubles. Those more brief periods of pain or unexplained wonkiness (allergies, aches, mood swings, etc.) taken individually may not amount to much, but seen as part of a whole mean an awful lot to the health of those patients.


Daniel Sands, MD, an assistant professor at the Harvard School of Medicine and co-founder of the Society for Participatory Medicine believes today’s clinicians do not pay attention “to the spaces in between.” Doctors need to use “frequent life touches” to figure out what those patients are doing every day that affects their health and health management. Sands also notes that America has to stop looking at healthcare as a service industry, like a car wash, and more along the lines of a lifelong collaboration.

Alicia Staley, a patient advocate and CEO of Akari Health healthcare consulting, points out that patient-generated data might not be technically accurate, but it’s more important to the patient, and so it holds more value for the patient’s care plan. Who can define pain better, for example, the patient feeling the pain or the nurse looking at the patient?

From my own experience, if more doctors had taken my so-called anecdotal knowledge of symptoms seriously, there is no doubt that my suffering, and the very real, life-threatening conditions that altered my body irrevocably, would have been lessened significantly if not entirely avoided. The entire healthcare system needs to get on board with training doctors to talk to and listen to their patients—to place importance on those personal chats. Until then, as we endometriosis patients always say, if your doctor doesn’t listen, find another, and another, until you find one who will.