As told to Erica Rimlinger
At my annual physical in spring 2002, my blood work was not quite right. “Your liver function isn’t great,” the doctor said. “We’ll give it another year, and if it’s still off, we’ll do something about it.” I didn’t think much about it. I didn’t have symptoms worth noting. I was tired, of course, but aren’t most people?
The next year, when my blood work again came back looking suspicious, my doctor called and left me a message at work, saying he wanted to test me for hepatitis. I was surprised and more than a little confused: I had no risk factors. I was certain my doctor was wrong.
A few months later, I changed jobs. I had to wait for my new health insurance to begin, and I didn’t have enough sick time to take time off from work to go to the doctor anyway.
But health problems don’t always care about your insurance or sick leave availability. One day at my new job, I had a gastric attack that kept me in the bathroom for 45 minutes. There was so much blood I thought I must have been bleeding internally.
Once I composed myself enough to return to my desk and call my doctor, I had to ask my new, all male coworkers: “Can somebody drive me to the hospital?” Panic ensued. After debating who had the keys, what hospital I was going to, and who was going to call my parents, one coworker screeched his car up to the front of the building and drove me, quickly and sometimes in the wrong direction, to the hospital. I tried to stay calm amid the chaos, but inside, I was panicking.
At the hospital, the tests revealed no clues to the source of the attack. I was instructed to make an appointment with a gastroenterologist, a GI doctor. I saw him the week before Christmas, and he told me he thought I had primary biliary cholangitis, or PBC. As part of the diagnosis, the doctor ordered a liver biopsy to confirm this and said that in his 30 years practicing medicine, he’d only seen one other person with this condition.
What was PBC? My mom and I sat crying in the car outside the doctor’s office, searching the internet on our phones. I read that I could require a liver transplant and that PBC could shorten my lifespan. I didn’t know if I was going to live or for how long. We didn’t tell anybody, except for my husband, until after the holidays. I didn’t want to ruin Christmas.
The biopsy confirmed I had PBC, and I started taking a medicine that would be the only PBC treatment available to me for many years to come.
Some people have symptoms that lead to their PBC diagnosis, but I didn’t. After I was diagnosed, however, I started experiencing severe diarrhea, making my normal daily activities impossible. One memorable occurrence found me crouched under an umbrella in the pouring rain on the side of a highway. With the help of my husband and family, I coped, eventually developing systems and tools to get me through. Hoping to improve my health, I had gastric bypass surgery in 2007, believing — unrealistically — that weight loss would help with all my liver problems. It didn’t.
2022
I stopped investing my energy in wishful thinking and realized I needed to live with my illnesses, not just survive. I started with my upcoming high school reunion. In high school I’d been a wallflower: I didn’t participate in activities and kept to myself. But today I realized that person needed to change. I volunteered to help plan the reunion, and the reunion committee gave out a new award that year: the butterfly award. I won it because I had finally come out of my chrysalis. I knew I was on the right path.
I started advocacy work, which I continue to do today. Every February, I head up to Capitol Hill to advocate for rare diseases. My goal is to knock on every door every year until there are no more rare diseases to cure.
After a while, the PBC medication I’d been taking for many years stopped working as well as it had been, and my blood work started to show that my liver function was getting worse. My gastroenterologist was retiring, but through networking with other people living with PBC, I found a doctor who put me on a new medication that turned out to be a good fit for me.
Then the FDA took some steps that impacted my ability to get the medicine. My newfound advocacy and lobbying skills came to the rescue when I later testified before the FDA on behalf of the medication. After the hearing, the FDA put steps in place that would keep the medicine available. I’d been heard.
My experience with a rare chronic illness has taught me to find something good out of every bad thing. Today, I have hope for new developments that will be coming with improved understanding of the disease. I wish more people with PBC knew they have treatment options. There’s no cure — that’s true — but you can make plans.
You can live a life and be a whole person, not a statistic. I have PBC, but I’m not PBC, and I’m not defeated by it. Dealing with a rare chronic illness has helped me discover a belief in myself I never knew I had.
This educational resource was created with support from Gilead.
Have your own Real Women, Real Stories you want to share?Let us know.
Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
