As in the case of PBC itself, every one person is an individual and will deal with things differently. After the shock of diagnosis has worn off, you have a partial explanation for why you feel fatigued or why you're scratching yourself to death, but now you have to learn to live with these symptoms and try and maintain a quality of life. It's tough at first as you try to maintain a pre-PBC existence. You worry about your family, how they feel, how they will react when the house is a mess and they have no clean under shorts. If you work then you have double the trouble. It isn't easy working through pangs of guilt as well as having to live alongside the symptoms of PBC, but eventually you have to find a middle ground and I found the following helpful.
Educate Yourself and Those Around You.
I recall when I first mentioned PBC to my friends. "I've never heard of it," they said. Join the club I felt - because I never had either until I was diagnosed. As we become more aware of our condition, it's easy to slip into "doctor's talk," as we become at home in the medical world. "Well my ALP is elevated, but my bilirubin is normal, AST and ALT didn't come back so good though." We sound knowledgeable and amidst other PBC sufferers that explanation is great, but tell that to a friend and you're probably going to get another "Huh?"
Remember how you felt and how little you may have known when you were diagnosed, and help those around you understand the condition. I realized for example how poorly I had explained it when a friend of mine told another friend - "Her liver is eating itself." Keep it simple and to the point, if friends and family don't understand then they'll find it difficult to offer assistance.
