'Empowered' heroes' hard lessons now help others
Empowered Patient salutes heroes who embody the spirit of health empowerment
Personal struggles inspired them to create foundations, Web sites to help others
Dr. Andrew Weil: "It is the 'difficult' patients who often have the best outcomes"
By Elizabeth Cohen
CNN Medical CorrespondentATLANTA, Georgia (CNN) -- When you think about health advice from Dr. Andrew Weil, you probably think of herbs and vitamins, a good diet, and plenty of exercise.
Many leaders in the patient empowerment movement have been ordinary people, not health professionals.And all of that is true. But Weil has one more prescription: Become an empowered patient. "Disempowerment," he says, is all too common among patients, and "adds to their distress and is an obstacle to recovery." Weil advises: "Do not be passive. Remember: It is the 'difficult' patients who often have the best outcomes." This week's Empowered Patient celebrates six people who have taken health matters into their own hands. Armando and Victoria Nahum lost a son to a hospital infection and overcame their grief to start a campaign to help others avoid the same tragedy. Gilles Frydman watched his wife battle cancer and started a listserve that's been used by over half a million people to share valuable advice about fighting cancer. A pharmacist, tired of seeing the same medication errors at his hospital, left his job to start a national campaign to stop medical mistakes. Susannah Fox, a lead health researcher at the Pew Internet & American Life Project, says many of the leaders in the patient empowerment movement have been ordinary people, not health professionals. "When your life is on the line, or when your child's life is on the line, nobody's going to be more motivated to get to the truth than you," she says. Maybe, she says, it's just because the Fourth of July holiday is upon us, but Fox thinks of patient empowerment as a particularly American movement. "It seems very American to have citizens who change the world for the better," she says. * * * This is why I blog ... to encourage others to be "difficult" empowered patients who refuse to accept inaccurate psychiatric labels, medications proven to be useless, and shoddy treatment.
Because I did not get the right treatment in the crucial early days of this relapse, I've been told the deterioration was too severe and I'll never recoverenough to return to the career I loved. But because of all the false statements in my medical records, I can't get approved for Social Security Disability benefits, either. I was too sick to stand up to the doctors, and really should have asked one of my friends to come with me to argue on my behalf that the doctor was making false assumptions about me, and demand that the doctor give me the expert-recommended treatment I asked for, and not something that made me even sicker, or even pills that I'd been told not to take because of a prior bad reaction to a related medication. (I finally accepted that prescription, though I didn't fill it, because I simply didn't have the energy to argue any more.)
My doctors got away with a lot that I wouldn't tolerate otherwise simply because I was too sick to wage protracted arguments with them; it was easier for me to go along with what they wanted to do, and prove it was useless by trying it, than to debate with them that I already knew anti-depressants wouldn't help me because I'm not depressed. At the beginning of every appointment, I asked for sleeping pills, and at the end, I'd be too exhausted from simply getting to the appointment to argue when the doctor yet again gave me something else.If I can spare one patient the same fate, it's worth the time I spend blogging. Get the facts, stand your ground (or have a friend/relative stand your ground for you), and don't settle for anything less than the correct treatments for what you have. This is not about the doctor's ego, it's about your health.