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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.

How do you explain to people the unseen symptoms like fatigue and joint pain and itching to people who don't get it?

A myPBCteam Member asked a question 💭

I am tired of hearing , " You look fine." or " You just need to work out more." Somedays I feel ok, but many days my joints hurt, it is even an effort to get up. I do as much as I can and then just rest. Itching and burning feet are no joke. It is tough because when I am in a flare, I can't get off the couch the fatigue is so bad. I currently take Urso, Livdelzi, and once a month I have Nemluvio for the itch. Thanks for the input.
Gayle

February 19
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Fatigue and Primary Biliary Cholangitis: 6 Tips To Help Read Article...
A myPBCteam Member

G1!

March 10
A myPBCteam Member

To people you’re not close to I would use “Please don’t judge my health according to how I look. It’s called invisible for a reason.” Your statement is hurtful and stigmatizing. I recommend… (fill in) for information on what I’m going through.”

Been honest about my mental health for a few years now. I got really tired of using the words “Bipolar, OCD, and PTSD as adjectives. I even had to explain to a nurse and coworkers that it was offensive, stigmatizing and hurtful. I’m doing the same with this illness. Please don’t be shamed, humiliated or honest. In the long run it hurts you more physically, mentally and emotionally.

February 22
myPBCteam

How can you help others understand the invisible symptoms of PBC like fatigue, joint pain, and itching?

It's incredibly frustrating when people don't understand that PBC symptoms are real and debilitating, even when you "look fine." Here are some ways to explain your experience:

Use concrete comparisons
- Describe fatigue as Show Full Answer

How can you help others understand the invisible symptoms of PBC like fatigue, joint pain, and itching?

It's incredibly frustrating when people don't understand that PBC symptoms are real and debilitating, even when you "look fine." Here are some ways to explain your experience:

Use concrete comparisons:
- Describe fatigue as "bone-crushing exhaustion that doesn't improve with sleep"
- Explain that it's not regular tiredness but a lack of energy that affects your ability to work, do daily tasks, or enjoy activities
- Compare the itching and burning feet to an unbearable sensation that can keep you awake at night

Be specific about how symptoms affect you:
- Explain that some days you physically cannot get off the couch during a flare
- Share that joint pain makes even getting up an effort
- Mention that you have to pace yourself and rest after doing what you can

Educate about PBC's unpredictability:
- Help people understand that symptoms come and go - some days are okay, many days are not
- Explain that this is a chronic liver condition with real physical symptoms, not something willpower can overcome What myPBCteam members suggest:

A myPBCteam member shared their approach: being your own advocate and speaking up about what you need. Others emphasize that when doctors acknowledge your symptoms, it helps you accept the process and validates your experience - the same applies to friends and family.

Consider asking people to simply listen without offering solutions like "just exercise more." You might say: "I need you to understand this is a real medical condition. What would help most is your support, not advice."

It sounds like you're already doing an excellent job managing your symptoms by listening to your body, resting when needed, and working with your healthcare team on treatments. That's exactly the right approach, even when others don't understand.

February 19

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