There is a slowly emerging trend in chronic illness, very slowly emerging, but you can see elements of it here and there. I have referred to it before in books I’ve read like Richard Cohen’sBlindsided about his multiple sclerosis and his newest book, Strong at the Broken Places, that profiles people with a variety of chronic conditions. There’s Jill Sklar’s book, The Five Gifts of Illness about living with Crohn’s disease, and now my own book, The ABCs of Loving Yourself with Diabetes, featuring a new approach to living with diabetes.
The emerging trend in chronic illness has various components. Here are some of them in no specific order:
1.To live with illness from a different perspective – that of using your illness as a catalyst to find greater joy, purpose and meaning in your life.
2. To see the patient as the central figure in managing his or her illness, rather than the health care provider (hcp), although hcps are essential for information, education, direction and advice.
3. The hcp acts as a coach to collaboratively, with the patient, create a treatment plan that really works for the patient.
4. Hcp and patient together examine the patient’s “life systems,” ie cultural mores, food preferences, family structure, support network, neighborhood advantages or limitations, work etc. in order to design a treatment plan that will work in that individual’s unique life.
There’s an interesting article on a management blog that speaks to these points titled, “Why patients have to be doctors today” It’s worth a read. The article looks at diabetes in particular not so much as a medical condition, but from the point of a chronic condition that need to be managed by the patient. It is a bit lengthy, but don’t let that scare you, nor some of its “management-speak.” You will get an insightful view regarding what supports good diabetes management and what patients and the medical community are coming up with.
I wonder what has tipped our gaze now to look at chronic illness through this prism of patient management and what can be gained from illness. I would imagine it’s because we have new medicines and procedures that allow us to live longer with illnesses that would have killed us decades ago. With someone getting diabetes every 10 seconds around the world there will only be many, many more individuals, and by virtue of that, also families living with chronic illness.
What we need now is for our medical professionals to be trained in chronic care so that they can help patients better, and I’d want to say best, their quality of life within the parameters of their illness.
Since doctors are trained in curable illness – diagnosing, medicating, cutting and curing, there is little in their toolbox to help those of us with life-long conditions. But I see some headway and as “Why patients have to be doctors today” points out, it is a movement starting on the ground with patients supporting and counseling each other as many from the inside report peer-coaching will be the next wave in chronic care. We see it evidenced already on the health and community web sites popping up every day, and programs like my own A1c Champion program, where I, merely as a fellow patient, deliver motivational diabetes presentations to diabetes patients.
It is my hope that my contribution in diabetes will be to help people see that if you look at diabetes through a different lens, you can use it to create a bigger, more fulfilling, more meaningful and healthier life than you may even have had before. It would be nice to think the medical community is not too far behind me.