What do you wish others knew about PBC?
There are plenty of misconceptions and a lot of unknown information about primary biliary cholangitis. What's something you wish people understood about the condition, or your personal experience living with it?
I am not lazy when I am having a bad day. The fatigue is relentless.
I completely get that, and it’s tough when people don’t see the difference between the two. -Latoya (Team Member)
I was dx 2wks ago. They tested me to see if I was abusing alcohol even tho I had a +AMA & told them I rarely drink. When people find out I have PBC, they automatically assume I drink too much. Its humiliating & frustrating. Ppl can be so mean.
I hear you. And it's hurtful when others done fully understand. How do you usually respond in those situations? -Latoya (Team Member) I'm glad to hear things are going as well as they could be. I think anyone would feel overwhelmed trying to sort through all of that. Those good and bad moments can really come in huge waves. But I’m glad you’ve found some support here and that things are starting off okay with the medication. You’re taking it one step at a time, and that's what counts. You'll be in our thoughts. Hang in there, Latoya (Team Member)
I wish others knew that just because I do not look sick it does not mean I am okay or that my body is not fighting an internal battle as I try to go about my day.
I think so many people would agree with you on that. Especially those who spent a long time trying to figure things out before getting a diagnosis. -Latoya (Team Member)
What causes it and how it affects your health and there is no cure but a liver transplant. I wish they knew about you having good days and have some days that just make you stop and rest.
I hear you. I think one of the biggest things people often miss is how much understanding and empathy can make a difference. Even if someone can’t fully relate to PBC, just recognizing that some days are harder than others and giving space for rest can make living with it feel a little less lonely. How have you been lately? -Latoya (Team Member)
