Helping others to understand my PBC
After struggling with debilitating symptoms, getting a PBC diagnosis can bring both frustration and relief. Sharing what you're going through, at your own pace, can help friends and family understand and support you.
Many people with PBC appear healthy, which can make invisible symptoms like fatigue hard for others to understand.1 It can help to explain that your energy is limited at the moment, and by being mindful of how you use it, you can gradually build up your energy and do more over time.
It's okay to ask for help and accept it if offered. You might not be sure of what will help most to start with. So, explain to your friend or family member that you are figuring out what works best and might ask them to do different things at different times while you work it out. You could also suggest they visit some of the patient websites mentioned earlier to improve their own understanding of what you're going through.
References
- British Liver Trust. Coping with fatigue. Available at: https://britishlivertrust.org.uk/information-and-support/living-with-a-liver-condition/fatigue/. Last accessed April 2025.