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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
November 26, 2024
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Answer Summary

Members opened up about the often-invisible struggles of primary biliary cholangitis, with overwhelming agreement that debilitating fatigue,... Read more

Members opened up about the often-invisible struggles of primary biliary cholangitis, with overwhelming agreement that debilitating fatigue, brain fog, muscle cramps, and bone aches are rarely understood by family and friends who dismiss symptoms because patients look fine on the outside. Several members shared the compounding emotional toll of feeling isolated and unsupported, describing how the lack of validation from loved ones and even some medical providers has led many to seek therapy for anxiety and depression alongside their physical symptoms. A recurring theme was the frustration of living with an invisible illness where appearances deceive, leaving members to navigate severe physical limitations, advanced disease stages, and complex comorbidities while feeling alone in their daily struggle.

A myPBCteam Member

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.

November 26, 2024 (edited)
A myPBCteam Member

Brain fog, muscle cramps and feeling alone.

November 26, 2024
A myPBCteam Member

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.

November 26, 2024
A myPBCteam Member

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 ❤️

November 26, 2024
A myPBCteam Member

Ronda I am there with you. I have zero support from family or friends. Even when you try to educate them. They still don't understand.

November 26, 2024

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