At the end of 2019, I was diagnosed with primary biliary cholangitis (PBC). I had just turned 31, and I remember feeling like my world was caving in on me.
Of course, I immediately ran to Google to look up everything I could about my new diagnosis. That was my first mistake.
At the time, the search results led me to believe that I would be dead within 10 years of my diagnosis.
PBC is not a death sentence
Following my diagnosis, I cried for days. I had a lot of sleepless nights at the beginning because I felt so painfully sad.
After some time into my diagnosis, I learned that my anxieties were not rooted in fact, as the information I had found regarding PBC was not updated with current findings and research. I’ve since learned that there are so many new treatments and therapies out there that make PBC no longer a death sentence.
If there’s one piece of advice I could give anyone who has recently received a PBC diagnosis, it’s this: do not turn to Google for information about the disease.
A lot of information out there hasn’t been updated with modernized treatment methods and research. Educating yourself is the best thing you can do when you are first diagnosed with any chronic illness, but please be sure you are reading reliable sources, such as peer-reviewed medical journals. You want to look for information from researchers and medical professionals only.
Learn more about helpful links and resources for PBC
Support is out there
The next thing I wish I knew before my diagnosis is that I was never truly alone. I remember feeling alone in my thoughts and feelings, even though I had a lot of support from my family and friends. But I knew that unless someone had received the same diagnosis, they could never truly understand what I was going through. None of my support system felt the betrayal of their body failing them the way I did.
Even though the diagnosis can feel ostracizing, know this: There are many other people who have been diagnosed with PBC. Support groups are one of the primary ways to connect with others who share the diagnosis. Personally, I was able to find a support group that became a lifeline for me.. I have a PBC family now. Locals in the group even try to meet up regularly for lunch and to catch up with each other.
Because of groups like these, I had two incredibly important mentors to me at the beginning of my diagnosis. These two inspired me to start my own PBC support group in the fall of 2023. In four months, my group has grown to over 1,000 diagnosed members.
My goal with my group is to foster an environment in which PBC warriors can feel safe to be vulnerable and share their experiences while navigating life with PBC. One of the rules for my group is that you must have a PBC diagnosis to join. If you would like to join my group, it’s called “Life with PBC Primary Biliary Cholangitis” on Facebook. If you decide to join, be sure to answer all the questions when you request to join, and include that I recommended you.
You are more than your diagnosis
The final thing I wish I knew when I was first diagnosed is that everything is going to be O.K.. After my diagnosis, my world felt like it was caving in on me. My life was falling apart. I didn’t know where to go from there or how to pick up all my broken pieces. But life goes on, and your diagnosis does not define you. You are more than your diagnosis–you are a warrior.
