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?
That one suffers from exhaustion because of the disease, not because we're lazy. Also, people keep thinking it is alcohol related, and am tired of telling them it's an AUTOIMMUNE disorder that we did absolutely nothing to get!
I hear you. People are so quick to judge when they cannot actually see what someone’s body is dealing with internally. No one should have to keep defending their illness on top of living with it! -Latoya (Team Member)
That the fatigue is not something a nap will resolve. I am not lazy.
Others viewing it as laziness really overlook what’s actually going on. -Latoya (Team Member)
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)
