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A myPBCteam Member asked a question 💭
Sweden

I notice that when people ask how I am I always reply tired 🤣. But given this seems to be a permanent state the last 2 years I am wondering how best to reply. I want to be realistic so people don’t think I am fine - but I don’t want to always just be saying I am tired - which makes people begin to switch off, stop hearing etc.

How do you respond so you aren’t dismissing your situation but so you are just always saying the same thing? Do share!

October 17
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A myPBCteam Member

I agree with all of you!! I feel like ever since I've looked a bit better now... everyone that "cared a lot" when I was first diagnosed doesn't ask me anything anymore...like it's "old news" and they hear "Blah, Blah, Blah." Thinking "Quit your whining!!" --like everything's back to "normal". And also... DEFINATELY doesn't help that the public knows nothing about what PBC is, etc...it's like an over-exaggerated made up sickness. Or an excuse of some kind!

October 18
A myPBCteam Member

If you’re looking for something with a little humor you can use some that I have used in passing while I was working.
1. My body is 3 fries short of a happy meal today.
2. My body and I are in a custody battle over energy limits.
3. Can’t wait for the caffeine to kick in.
4. I’m proceeding with caution cause my energy is on leave of absence.
I found people at work were shocked and confused by “I feel like sh.t today.” Not a good answer to give a boss in a meeting with colleagues.
Tired they seem to think it’s just lack of sleep and a little bit more rest will miraculously help.
Or sometimes “exhausted” works too.

October 18
A myPBCteam Member

It depends on whether they're just an acquaintance or a close friend. An acquaintance is usually asking to be polite. My close personal friends are really concerned about my well-being, I'm truthful with them.

October 17
A myPBCteam Member

Interesting question Pippa! My public face will say, “I’m great how are you?” My thoughts are that the greeting ‘How are you’ is just a casual question and is more like an icebreaker. I reserve the true answer for my close friends/family and not always. I find that everyone has their own problems and I don’t want to really say how I am because it leads to more questions about me and I won’t go there. In the final analysis, there really is no wrong answer.

October 17 (edited)
myPBCteam

What a relatable struggle — and honestly, "tired" doesn't even begin to cover it most days, does it? 😄

Living with PBC fatigue is real and persistent, and it makes total sense to want people to understand without feeling like a broken record. Many myPBCteam members share this exact frustration.

Here are some alternative Show Full Answer

What a relatable struggle — and honestly, "tired" doesn't even begin to cover it most days, does it? 😄

Living with PBC fatigue is real and persistent, and it makes total sense to want people to understand without feeling like a broken record. Many myPBCteam members share this exact frustration.

Here are some alternative responses worth trying: - "I'm managing" — honest, without inviting a long conversation
- "Having a slower day today" — signals something without over-explaining
- "Not at 100%, but here!" — keeps it light but real
- "My body's working hard today" — true for PBC without needing details
- "Better than yesterday / worse than I look!" — a nod to the invisible illness reality

The key is finding phrases that feel *authentically yours* so they don't feel rehearsed.

One myPBCteam member put it perfectly: "We look fine, but sometimes we don't feel fine." You don't owe anyone a full explanation — just enough truth to feel seen without exhausting yourself further. 💛

October 17

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A myPBCteam Member asked a question 💭
Los Angeles, CA