In 1975, Jennifer Jaff was diagnosed with a debilitating bowel disorder called Crohn’s Disease. Over the years, she has had a total of eight surgeries. And during one 12-year period, she was also prescribed steroids that caused her to gain 120 pounds and suffer violent mood swings.
Her darkest period, perhaps, came after moving from Washington, DC, to Connecticut in 2001. Jennifer got so sick that her feet and legs swelled to the degree that, “my primary care physician gave me instructions in case my skin split,” she says. The following year, Jennifer’s Crohn’s Disease got so out of control that her kidneys began shutting down.
“I wish I had known at 19 that it is okay to ask questions,” the 52-year-old lawyer says. “I was afraid to question my doctors—afraid that they would not like me or want to care for me.”
For years, Jennifer’s greatest fear was not complying with her doctors’ instructions. But when her kidneys began failing, her thinking shifted. “I would not have taken control over my medical care had I not gotten so sick that I almost died,” she says.
Jennifer now believes that she would have avoided a lot of suffering over the years had she known the full array of options available to her. When first diagnosed, she was told, “Don't worry, here is some medicine; you'll be fine.” She wasn't.
When the medication didn’t work, she tried another failed treatment: Her first abdominal surgery, which caused scar-tissue buildup in her bowel. “Having that surgery,” a doctor told her later, was “the worst thing.”
By not exploring every alternative, Jennifer experienced many bumps in her treatments over the years. But now, Jennifer knows to ask doctors and other patients about different treatment options so that she can figure out which ones will work best for her. The strategy has paid off.
Today, Jennifer is managing her Crohn’s and a subsequent diagnosis of gastroparesis, a stomach condition, mostly through a carefully chosen regimen of medicines and lifestyle choices. She makes sure to eat healthy. She swims every morning. And whenever a health concern arises, she always asks questions about her treatment options.
Following this strategy has helped Jennifer feel better—well enough to work a full workweek—and wise enough to understand that being a “good” patient means exploring all your options.
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