The brain fog, muscle cramps, bone aches and the heavy bouts of fatigue. My family and friends don't get it. Act like they're a doctor and ask what I'm eating or tell me what to eat, tell me to exercise more, and even worse, tell me it's mind over matter or just roll their eyes at me. They say I look fine so they don't understand why I'm having these symptoms. Definitely wreaks havoc on your mental well-being when people don't believe what you are experiencing and are not supportive, even after you've shared info about PBC with them from reputable medical sources.

Brain fog, muscle cramps and feeling alone.

For me, it is the fatigue. I talk to my husband about it, but it doesn’t really get the intensity of it. My friends don’t understand the fatigue at all and give me grief when I suggest we meet earlier for outings.

I definitely get it! At 80 with PBC. I finished work at 52 overwhelmed with fatigue! I had asthma+ sinus/polypectomies since teenager but always been told that I looked really well so illnesses were invisible to anyone outside my near family! During this last year I have added second body location of osteoporosis but fortunately receiving ongoing six- monthly Denosumab injections! RA diagnosed & Rheumatologist also suspects I have sclerosis, heart murmur and Vocal cord disfunction! My husband retired at 72 and has been happy to take over everything at home, watches my diet and and makes sure that I rest! Just two of us and a dog.
I love doing Sudoko and can take life easy now but Brain fog is my latest worry. My PBC Fibroscan results are normal but Consultant wanted to refer me to a Memory Clinic. My Cognitive test was very good but short term memory is not so good. Was advised to meet people. My husband advised me to join a local OAP group as some younger go there who were my readers when I was the local Librarian. I love singing & music but with my croaky voice I cant join a choir! Lol

I understand maybe because we don't look sick they just don't get it,so I just try not to say to much even to my husband,I think he tries to understand but he doesn't get it either,just people who are there understand,hugs to all and stay strong ❤️