I love my friends, but when they have to plan our fun around their possible symptoms, it’s a drag.
When my “How about meeting for dinner?” is met with “I have to see how my back (knees, head) feels,” I want to call someone who’s available – even if they have to crawl there.
I’ve been told I just don’t understand. Yes, I’ve been lucky healthwise as I’ve aged, but not entirely unscathed. Recently, a too-quick turn of the knee resulted in torn cartilage. I found a jock doc who understood my need to move. Then I thought of myself not as an older orthopedic patient but a jogger-in-recovery. I iced, I medicated and I visualized myself jogging my usual miles. Soon, I was.
It turns out that this attitude, whether you view it as arrogant or in denial, may keep me jogging – and even alive – a lot longer.
“People who come in kicking, screaming and bucking the system are labeled as difficult, but they are the ones who have a life and an identity, illness be damned.” —Valerie Olson, R.N
Attitude = Life or Death
Research suggests that to move on and even survive, you need to understand the impact of your condition – how bad is it, really – and what you have to do to manage it. You also have to become what some doctors call a difficult patient; that means you insist on information and emphasize you want your life back, asap, and that you’re willing to work to get it back. In other words, be inpatient!
In fact, how you view your condition may play an even larger role in survival than the actual severity of an illness, according to a recent report. In one study, kidney disease patients who thought their treatment wasn’t helping (when generally it was effective) were more likely to die, perhaps because they were less likely to follow medical instructions.
In another study, heart attack patients who thought their disease was more severe than it was limited their activity and were much slower than others to return to work.
Is Your Doctor Turning You Into a Professional Patient?
If you’ve fallen into the “sick” camp, you might be able to blame your doctor. The medical system can unwittingly play into a person’s tendency to become a ”professional patient,” according to Howard Leventhal, Ph.D., who chairs the division of health at Rutgers University’s Institute for Health, Health Care Policy and Aging Research. Leventhal says that your doctor may not give you enough information to understand your condition. When a doctor clearly explains symptoms, severity and treatment, you can realistically modify your fears and activities. That way, he says, “you don’t have to live your life around symptoms.”
Recently, Leventhal had foot surgery. “I became someone with a bum foot,” he says. “I had to unbum it.” He found he was coddling his foot. He constantly reminded himself not to. Soon, he was back to his usual routine of walking three or four miles nearly every day, and he’s over 70.
Of course, you could decide to be a “difficult” patient, demand information and unsubscribe from the “you’re sick” memos. It’s not an easy thing to do given the nature of the medical system, but it could save your life. Valerie Olson, R.N., is a Seattle patient advocate who worked in emergency rooms for 20 years; she says, “What I found was, people who sat there passively became a patient. You could see the transformation happening. I truly believe these people don’t do as well as those who come in kicking, screaming and bucking the system. They are labeled as difficult but they are the ones who have a life and an identity and they want to get out of there and carry on, illness be damned.”
Olson sees both sides. She has lupus and blogs about living life despite challenges. To read he blog, click here.
Shedding The Patient Image
“You can make yourself a psychological cripple,” Leventhal says, or you can figure out how to manage an illness.
He says those raised in difficult circumstances or who saw parents solving problems ”instead of rolling over and playing dead” are often skilled at shedding the patient role.
I’m crediting my mother. Growing up, if any of the four of us woke up and complained we didn’t feel well, she resisted encouraging a ”patient” mentality.
She had a mantra we can all still recite: “Get up, go to school, you’ll feel better.”
You know what? We almost always did.
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What do you do to stop yourself from being a “good” patient?