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?
An illness really does exist even though it is invisible to others.
This is so true. Everyone deserves to feel believed and supported, even when their symptoms aren’t something others can see. -Latoya (Team Member)
All of the above! The good days are normal; the me before I started having symptoms. The bad days make me not want to leave the house... Just in case. Misdiagnosed and an uninterested dr at first who did no fillow up testing when the enzymes kept showing wacky. Second , younger dr followed thru until we had answers. Grateful for him. Current team is very responsive and that means a lot! My husband understands better than a lot as he knew me before the changes started, knows I don't run to the dr or over react if I'm sick.
I've had very strong heath until this so something chronic caught us all off guard. Having to cancel plans based on how my morning (or lack of sleep the night before) is frustrating and I wish they knew I'm not avoiding them or don't want the fun things. I'm 70 , diagnosed at 66 at stage 2 to 3, and this is the first time I've had to be on a daily rx. If they knew how frustrating it is to those of us living with it, maybe they wouldn't be so frustrated with us!I hear you. One of the hardest parts is having to constantly adjust to a version of life you never expected, and your intentions get misunderstood by people who don't understand what you're going through. I’m glad you have a husband who knows your normal and can recognize when something really isn’t right, and a health team that actually listens and follows through. I hope your medication is helping you feel more like yourself and giving you more good days, and I hope you continue to do the best you can. Be encouraged, Latoya (Team Member)
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)
