Recently, I watched a video Video of Elizabeth Gilbert, author of “Eat, Pray, Love” speaking at the tenth anniversary celebration of “O” magazine. She talked about how women are in a unique position as they have few role models, as the choices and opportunities that we have today were never available to our female ancestors. As she noted, her dust bowl era grandmother didn’t wake in the middle of the night obsessing about whether she should learn to speak French.
People with chronic conditions are in a very similar situation. Diseases, such as cancer and AIDS, which even just a few years ago were terminal diagnosis, are now conditions people can live with for many years. Fact is, people are outliving their diagnosis and dying from something totally different.
The “baby boomer” generation has now entered the “golden years,” as they turn 65 this year. They too are facing unique challenges and are lacking for role models since many did not have parents that lived to see retirement. Still others are sandwiched between very elderly parents, children of various ages and even grandchildren they are raising. To top it off, many of the boomer generation are already living with one or more chronic conditions.
The big question is how do we live? Who is doing it right? If I try x, y or z, because that’s what Fred is doing and he’s having great results, and it doesn’t work, does it mean I’m a failure? Am I failure because I have this diagnosis? Do I feel worthless because I’m 70?
While we can look at our career paths, or lack there of, and think about the choices we made, it’s seems a bit different when it comes to health care. Why? Because medicine is suppose to be a science. “This medication works for 90% of the people.” “By the end of five years, only 5% of those with that diagnosis are alive.” And so it goes. The fact is, medicine is far from an exact science. Statistics they give today, have no relevance when a new study comes out a week from now. Or does it?
The bottom line, is that as much as we’d like to think that scientific method is the end all and be all when it comes to health care, living with a chronic conditions, and aging, are just as much a journey as figuring out what you want to be when you grow up. (As if I’ve succeeded in that department.)
As Gilbert noted in her talk, women are pioneers in continuing on. This is very true for those learning to live with chronic conditions. A hundred years ago, 80% or more of the population died from an acute illness and a small minority lived for many years with the condition that would result in their death. Today these numbers are reversed-most of us will live for many years with one or more chronic conditions.
Consequently, the medical community, which is based on an acute care model, is still trying to figure out how to handle this very different situation. Those with chronic conditions can’t afford to wait while it’s being figured out. We need to be in charge of our health care.
For each of us, the journey will be uniquely ours. We will make mistakes. We will take risks and succeed and other times we will fall flat on our face. However, we need to continue on, charting our own course, sharing what we know, and supporting one another in the process.
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