Making connections with others who have primary biliary cholangitis (PBC) saved my life in 2020 after my diagnosis.
That time in my life was extraordinarily difficult. Not only did I find out I have a rare autoimmune disease affecting my liver, but I was also working on the front lines of a global respiratory pandemic in an intensive care setting. To say it was a lot to deal with is putting it lightly.
What is PBC?
Primary biliary cholangitis (PBC) is a rare, chronic autoimmune disease that primarily affects the liver. In PBC, the body’s immune system mistakenly attacks the small bile ducts within the liver, causing inflammation and gradual destruction of these ducts. Bile, a substance essential for digesting fats and removing toxins, becomes trapped in the liver, leading to liver damage over time.
I remember the first time I talked to someone else with PBC on the phone. All I could do was cry. I was emotional because I was so fearful, but I was also emotional because I wasn’t alone.
Read more about PBC testing and diagnosis
Even though I had been working in health care for about six years at the time, I had never heard of PBC when I was diagnosed. And the things I saw on Google after trying to read up on PBC made me scared for my life. The first thing I saw on Google was a statement saying that the average life expectancy for someone with PBC was about five years after initial diagnosis. At 31, that was devastating to see.
The first person I met with PBC was Donna. She informed me that PBC is not a death sentence. She told me she had been living with PBC for well over 30 years and had even had a transplant. She was the facilitator of the first PBC support group I joined.
Donna lived about an hour or so away from me, and she planned to have a local meet-up with some other local PBC patients. I knew I had to go. So in February 2020, I attended my first meet-up. I met at least 10 other women who had PBC. We had lunch together, and we all went around and shared our stories. When it was my turn, I couldn’t get through a sentence without tears. The other women were all at least 20 years older than me. But for the first time in months, I felt hope.
The “PBC Moms”
Listening to others tell their journeys with PBC was very cathartic. I wouldn’t say my fear was gone, but I felt better. Several of these women I still talk to on a weekly basis almost five years later. I call them my “PBC Moms.” They have all taught me everything I know about PBC now.
They also helped to teach me that I am resilient and that I am more than just someone with an autoimmune disease. I am more than my diagnosis. And these women are why I am the PBC advocate I am today. They believed in me. And they remind me all the time that I am the future of PBC. And that they can’t think of anyone else who would do a better job.
It was incredibly meaningful for me after I was able to share that the U.S. Food and Drug Administration chose me to be the patient representative for PBC. I’ve struggled with “Am I good enough?” And these women are a constant reminder that I am.
Inspired by Donna and a few other fierce warriors, I started my own PBC support group and have grown it to more than 1,500 PBC patients in just a year. I want to foster an environment where we can all be ourselves and feel safe. It’s a place where having PBC doesn’t define you.
Better together
My support group is a big PBC family. We all are on different PBC journeys. Some people are just recently diagnosed, and some are people like Donna who have had PBC more than 30 years. I always say that we are better together. What one person doesn’t know, someone else will. And our knowledge and experience together make us unstoppable. These are my people. Everything I do in the PBC community, I do for them. We really are one big family.
We still have local meet-ups every few months. We even have members who go on vacation together. We are friends. We are family. And most important, we all understand what each other is experiencing. We feel for each other on a level that our support systems at home are unable to. Because we’ve all been there. Being able to communicate with people who truly understand what you are going through is priceless.
If you have a PBC diagnosis and would like to join the support group I started, you can find us on Facebook or by searching “Life With PBC : Primary Biliary Cholangitis.” We use a little green heart emoji in the group name. Just be sure to answer all of the questions when you request to join for approval.
