Saturday, January 31, 2009
"What best describes your condition in the past 30 days?" I asked my visitors, here at "Knowledge is Necessity." Nearly 200 people replied over late Dec and Jan. The results were not exactly encouraging:
Nearly one in four (24 percent) replied they were in crisis or close to crisis. Four in ten (42 percent) reported that they were stable but not well. Thus, a full six in ten of those who responded to my poll indicated that they are in pretty bad shape.
Contrast these results to the mere 14 percent who were evenly divided in being back where they wanted to be or better than they ever could have imagined.
In the middle, one in five (18 percent) reported they were on the way to recovery. Hopeful or false hope? Who knows? Perhaps we can split the difference.
No matter which way you parse the totals, the results are not encouraging. Granted, the poll is unscientific. Granted, the results could be totally skewed. But even accounting for all the distortions in the world we have clear evidence that our treatments are failing us, our therapies are failing us, and - let's apportion blame responsibly, here - we are failing us.
One advantage of this simple poll over far more sophisticated surveys is that those who responded were the judges of their condition. Patients, themselves, defined success or failure by their own criteria. In clinical trials and other studies, doctors typically fill out a symptom checklist (with patient input) and interpret the results. Having few illness symptoms typically means you are well, even though you may not feel well.
The world we live in is far different. For a lot of us, we have other things to deal with besides just our illness symptoms. On the flip side, a lot of us have learned to lead very enviable lives, despite a huge panoply of symptoms.
"Well" is how we define well, not how others define it for us. Even accounting for the fact that people who go online to find out more about their illness may be worse off than those who don't, we are dealing with an astronomical 86 percent who reported feeling well short of well.
Something is clearly wrong.