Sarka’s Blog – June 22, 2022
How to explain PBC to friends and family
I have now been diagnosed with PBC. This illness affects different areas of my life: more doctor appointments, new routines with medications, blood tests on a more regular basis, just to name a few.
You can’t go on this journey alone, and that means communicating all of this with your friends and family. I found this step hard. I was still in disbelief and yet, now I needed to share. How am I going to do this? The holidays are coming, which means family gatherings. I don’t want to attract attention or not be ready to offer explanations. I have long conversations with my husband about this. We go through different ways of approaching it. Should this be done via phone nor in person? This is a steppingstone to be able to have a successful support group, but there is no easy way to tell your friends and family.
I was nervous. I knew that “telling” meant saying it out loud, and that makes it real. You cannot know how they are going to react. Each person is different, and I tried to anticipate how this was going to go. My emotions were all over the place, and I found it hard…to hold back the tears.
I made the calls. I had some one-on-one conversations. None of them were easy. I dug deep and shared. I got so much love back. Reassurance. An extra shoulder to lean on. And SUPPORT. With me letting people in, this road wasn’t going to be as rocky or lonely as I had feared.
Sarka was born in Quebec. She has lived in Nova Scotia with her husband and daughter for more than twenty years. She was diagnosed with PBC in 2012. Most recently, Sarka was elected to Canadian PBC Society Board of Directors. She is passionate about spreading awareness for PBC and supporting those with PBC.