I am increasingly aware of the powerful role social media and networks play in how we are communicating with each other about health and healthcare issues. Spending the day in the charming Saugatuck/Douglas public library, I happily found an informative and well-written book that addresses this phenomenon! It is Laurie Edward’s In the Kingdom of the Sick: A social history of chronic illness in America. (Walker and Co, New York, 2013).
She writes about the stigma and misunderstandings that surround chronic illness, especially for those that defy diagnosis through clinical tests or have no known cure. These are now the leading health-related problems Americans face and want help with overcoming. I think this is a crucial topic to explore.
Our understanding of chronic illness is hampered by the limits of science and by society’s throwback belief that people who are sick have weak character or aren’t trying hard enough to be well. We have Lyme disease, Autism, Sensory Processing Disorders, ADD, ADHD, Depression, Sleep Disorders, Chronic Pain, Chronic Fatigue, and Fibromyalgia (to name a few), which are incredibly challenging. If you have these problems, Conventional Medicine has little to offer, and Complementary and Alternative approaches to treating them are a bewildering quagmire that feels overwhelming to enter. Then there are the regular issues of our time. It’s hard to go to a social gathering without hearing the cry of folks who wonder how the heck did I get ...arthritis, or diabetes, or high blood pressure? And why does everybody seem to have high cholesterol and low Vitamin D?
Increasingly, my patients come well prepared from doing their research on line, and they are getting their information from a wider range of sources. Edwards calls this phenomenon Health 2.0: the explosion of networks and social media tools that allow patients and health professionals to share health information. She quotes several in her book.
Becoming wired is an antidote to the alienation, isolation, and skepticism so many of us are feeling when faced with a health problem that seems to baffle our doctors and defy our attempts to overcome it. I hear people say their doctors don’t seem to care about why they have the problem. That is frustrating, and it erodes their confidence in the treatments their doctors are offering them. If you don’t know why you are sick, how can you make an informed set of decisions about how you would like to go about getting better? The trouble is, a lot of the time we don’t know why. The science of medicine has its limits, and we don’t want that to be true. Lewis Thomas called it the youngest science. Medicine right now is kind of like your 15 year old who you are sure was abducted by aliens and reprogrammed; you long for the day when he or she once again becomes recognizable. I think it is emotionally easier for doctors to ignore questions they do not have an answer for than to speak honestly and say, “I do not know.” Better to say I do not know.
As a physician, I am basically grateful to my patients who have the initiative to go exploring. I look to see what they’ve found, and try to be sure we are using credible, peer reviewed health resources upon which to base our shared decision making. I invariably learn something from this process. Moving forward in this age means we both show up and participate together in the shared agenda of improving our health. I say our because I recognize unless I am doing the work along with my patients, I am no longer being responsible or authentic as a physician.
Edwards says, “Participatory Medicine holds the premise that technology can fundamentally benefit patients and the doctor-patient relationship and when used appropriately, that information can be the bridge that connects both parties.” Let’s face it; I don’t want to feel isolated within the medical community. Believe me, you don’t want to spend your lunch hour inthe hospital doctor’s dining room. I learned that sad fact 33 years ago. I spend my days with patients. Patients don’t want to feel isolated or placed outside of the access to health information either, but they need reliable sources and education in critical thinking skills for this subject.
Unfortunately, networks and social media can be divisive, creating and us vs. them mentality. This is part of human nature. We have to be responsible to the overarching goal of helping each other and our society collectively toward better health. I see no value in the perpetuation of a mentality that does not move one toward unity with each other and the earth.
When someone wishes to take more responsibility for his or her health, I am happy to help. Brene Brown says we are wired to be connected. I think we are also born to collaborate. It’s the key ingredient. There needs to be transparency between us for this to work. We have to be honest, trust our own wisdom, and be willing to share. We share from what we know, and we have to do the work of learning to have authentic knowledge. We also share from our own experience—which is always valid---and has made us who we are. This kind of collaboration— when we are being authentic and wholehearted—is the true joy of being part of the solution to the mysterious and arduous journey toward healing.
We are all on that journey. I say we walk it together.