As I prepare for the Linda Lee Wells Memorial Annual Education Day (what a mouthful!), I have spent more time reading the comments and questions on "the scleroderma sites," particularly on www.inspire.com. Here, the Scleroderma Foundation has joined with Team Inspire to create a safe place for patients to communicate with one another, to share their stories of success and failure, and to question their doctors' advice.
I find that last area is, in fact, where a lot of posts focus. Perhaps it's just the discussions that I am drawn to opening and reading... but a lot of patients are wondering why their doctors have so much difficulty relating to them as people, listening to their concerns, considering them as partner, and approaching them with compassion. I admit it is hard for me to see the medical community lambasted at times, but my perspective has definitely shifted over these past 4 years.
When I first became a scleroderma blog voyeur, I was offended by the vitriol often blasted at the medical field. But, having now lived in the world of "patient" for some time, I admit I could blast a few doctors, myself. I have become, quite probably, a difficult patient. I refuse to return to doctors who offend me, who don't listen, who don't believe, or who patronize rather than work with me as a partner. It's hard--especially as a woman, and someone who loves to be liked and hates conflict--to stand up for myself. So, mostly I don't. I just don't schedule the return visit. But, driving home I have the best comments and most brilliant comebacks for all the injustices of my latest medical experience.
Becoming a patient is never a choice. I certainly don't relish the "sick role." But, if I have to be a person with scleroderma, I'm going to fight the disease and fight for the right kind of care. I'm a difficult patient. I think that we all need to be difficult patients. Not angry patients, not abusive patients--but patients who challenge our doctors' advice, who read the medical literature, who ask the right questions and demand the answers. Patients who understand the disease, want to know the options, accept the limitations of science, and can partner with their doctors. And, I can also assure you, doctors are out there who welcome these partnerships, who don't label this behavior as difficult, and who thrive on the challenge. Those are my fabulous doctors. I owe them a debt of gratitude I can never repay.
The philosophy of my health care team, whether they know it or not, is called "Patient-centered care." In this context it means "treating patients as partners, involving them in planning their health care and encouraging them to take responsibility for their own health." (AAFP 1998) Research also shows that patients who help to shape their treatment plans are far more likely to adhere to the plan. Difficult? I think not!
I read a brilliant essay on being a difficult patient which inspired my post today. Written by a scientist and a mother who died a few years back from scleroderma, I highly recommend it if you or a family member are struggling with any kind of disease.
Article on Being a Difficult Patient
