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 typed my comment but now can't find it. Here it goes, again:
I was diagnosed with PBC about 35 year ago, stage 1, as a result of liver biopsy after abnormal labs. I'm a retired Medical Social Worker and had never known about PBC until my diagnosis. I thought my GI doctor was crazy when he told me I needed synthetic bear bile salts. However, he was already treating me of ulcerative colitis, and I trusted him. Ursodiol has kept me stable, in stage 1, for a long time. I am grateful. The worst symptom is severe itching, mostly at night. Benadryl is the only thing that helps. And the fatigue is overwhelming sometimes, but who knows what causes my symptoms. I have 17 diagnoses (many are autoimmune) and I still function pretty well. I'm scared that I take so many drugs, but a Pharmacologist has reviewed my med list and told me there are no contraindications (hard to believe).
I would never wish autoimmune disease on anyone, but I am grateful for the understanding from friends who know what its like. As long as I survive I will seek to help others cope.I wish people could understand that PBC give horrible fatigue.
I also wish that people didn't hint with "Oh, a liver disease, did you drink a lot of alcohol?" I always have to tell that I'm not a drinker, and never was too, but in fact it is ridiculous that I have to defend myself.
And I hate the fact that some people say "Are you very ill? But you look very good"We hear this so often, and I wish there were more understanding around PBC and how much it can affect everyday life for those living with it. So many of the struggles are invisible to others, and you shouldn’t have to explain or justify what you’re going through. -Latoya (Team Member)
I could cry reading this. My family doesn’t get it. They know I have frequent Doctor appointments. They know I need to take medications. But, they don’t understand it when I am too tired to go out. My husband complains and thinks I just don’t want to be social and see people. My sister actually apologized when I missed a reunion. She said she doesn’t always understand what I’m dealing with. I have good days and bad. On good days I try to accomplish as much as I can. It can be a struggle for sure. Plus I was dealing with a hip replacement. Thanks for letting me vent. ( I can see why people end up divorced.)
PattyOh Patty, please don’t apologize for venting. Sometimes you just need to let it out, especially when you feel like the people closest to you don’t fully understand what you’re dealing with. But I’m glad your sister was able to recognize that she may not always understand what you’re going through. The fact that she apologized and recognized that there’s more going on than she may see says a lot, and hopefully that gave you a little comfort. How are you feeling now that you’ve had some time to recover from your hip replacement? -Latoya (Team Member)
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)
