In the beginning when I was diagnosed, I struggled with a lot of emotions.
I was confused because I didn’t understand primary biliary cholangitis (PBC). I had never even heard of it. I didn’t know anyone who had it. I had no information about PBC. I did what most of us do, and I went to the internet. I would spend hours every day trying to learn about my rare disease and anything related to it.
The problem was that information was scarce and inaccurate 13 years ago. Most of the things I read sounded like a death sentence. It was seen as just a matter of time.
In those early days my quality of life suffered. I was terrified. When I was diagnosed I had just had a newborn, and I had two other small children at home. I didn’t have parents or family to help me with my illness or children. I had no one to raise my kids if something happened to me before they grew up. I was grieving my little brother’s death and my father’s death during those years, too, along with being freshly postpartum when I got the news of PBC. PBC wasn’t my first autoimmune disease and it would prove to not be my last. However, this one scared me the most. I already felt like I was in survival mode. And I had no choice but to keep pushing through.
The first thing I wanted to do was educate myself and my doctors. Many of them had never heard of this liver disease. I made sure to announce to every nurse and doctor that I had PBC and what it was. I was just trying to spread the news. I also frequently shared about it on my social media, and I still do. Which is where I came to find support groups. I finally found out I wasn’t alone.
I found people who had been living with PBC for 20 years or more and were stable and doing well. I found people who had been diagnosed in their early 30s, like me. I found people who were 80 years old and doing fine.
I was often told we PBC patients would likely die with PBC, not from it. Over the years I’ve watched PBC result in transplants and even in death. Ironically, age didn’t seem to matter in any of these circumstances.
I learned that the main line of medication is ursodiol and that it is important to take every day for life. I have been very fortunate with getting it covered by my insurance and it always being in stock. Some patients have not had so much luck. I have been even more lucky that I’ve been a responder to it and that my labs generally stay stable year after year. I have had progression of PBC in the last decade, but it’s been slow and manageable thus far.
I’m not nearly as fearful as I used to be. I have learned to live with this diagnosis. I’ve watched science come a long way, even offering new treatments. The older I get the more I appreciate every day, and I try to live in the moment.
Finding support
As I mentioned, I found a lot of support on social media and on websites. I even found a real-life friend who had PBC. I think I was a lot of support to her in her early days. I began to add friends on Facebook from PBC groups and I started feeling better. Knowing I wasn’t alone and that other people were going through the same things made me feel less isolated.
PBC is an invisible illness. Not everyone understands the fatigue, the itching, the brain fog and the anxiety that comes with this. I found more support from others suffering with the same disease than I ever did from my friends and family. Unfortunately, I just didn’t have anyone in my life at that time who cared.
I’ve since become engaged, and my fiancé has spent the last six years standing by my side through all my medical obstacles. It is so much easier fighting a rare disease with someone by your side every day. I suggest all new patients share their struggles with a loved one, or even a therapist. It’s so important to share your emotions and not hold them in.
Self-care
Finding moments and ways to take care of yourself are crucial for your well-being. Sometimes just taking a 20-minute nap or stopping to scroll on your phone can be enough of a reset. I like to take walks and stop and take photos along the way. I like a hot bubble bath or a steaming shower at the end of a long day. I love fancy coffee, good books or to dig in the garden. As a single mom on a small budget my self-care is often short, sweet and budget-friendly. I must be okay with small — I cannot take vacations. The little things, isn’t that the joy of life anyway?
I would urge new patients to continue with their hobbies, to nurture their relationships and do whatever brings them happiness. I think it would be easy to fall into your feelings and fear if you didn’t hold on to the things dear to you.
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