The story of L. Marie
L. Marie started her career more than 20 years ago helping others access community health programs and healthcare—a skillset she never imagined would eventually be put to use advocating for her own health after being dismissed by her doctors.
It was January 2019 when L. Marie first sensed that something was wrong. She felt much more tired than normal, but chalked it up to the weather—thinking that the cold, dark winter days in Chicago were responsible for her feeling of being rundown.
“As women, we can explain away anything,” says L. Marie. “It took me a while to come to terms that there was something going on and that I needed to start looking for answers.”
When she visited her doctor, she was frustrated that her symptoms were discounted, even after her blood work came back irregular.
“How active are you?” “What’s your diet like?” were the questions her primary care physician asked, dismissing the serious fatigue L. Marie had been experiencing for weeks.
“As givers and caretakers—at home and at work—women give so much, but this was a moment in my life when I finally said, ‘wait a minute, I need to focus on me right now.’”
The fatigue persisted, but so did L. Marie. After pressing her doctor to run more tests, they noticed that she had elevated alkaline phosphatase (ALP) levels which can indicate liver disease or certain bone disorders.1 But an MRI and bone scan confirmed that her bones were strong, and she knew she needed to find out more about liver diseases.
Luckily, L. Marie’s health insurance didn’t require a referral to see a specialist and after doing some research on her own, she made an appointment with a hepatologist. Given her career, she knew how to navigate the healthcare system and within a week, L. Marie was finally in front of a specialist who would be able to give her answers. The diagnosis was primary biliary cholangitis (PBC), which was later confirmed with a liver biopsy, and validated what she had known from the beginning