Looking Fine Does Not Mean I Feel Fine: What Others Don't See

I’ve been experiencing more fatigue and brain fog since my 2022 diagnosis of primary biliary cholangitis (PBC). As these symptoms have increased, I’ve noticed how much effort it takes to seem fine.

Trying to carefully manage my energy

I keep coming back to Christine Miserandino’s Spoon Theory. In this analogy, a person living with chronic illness has limited energy for daily tasks. Each task uses a “spoon.” When the spoons are gone, little energy may remain for anything else.¹

When I first read about it, I thought, “That isn’t me.” I dismissed it as a useful tool. I was still doing many of the things I wanted to do. I didn’t recognize how carefully I was managing my energy.

Since then, I’ve come to understand why the analogy resonates. Unexpected physical or mental demands can use up spoons I had counted on for something else.

A battery that starts low

My energy often feels like a battery that never starts fully charged. It drains quickly and takes a long time to recharge. Most of the time, I feel that way before I even get started. That low charge isn’t always obvious to others.

Even when lab results look good, they don’t tell the whole story. I may look fine while feeling deeply tired. Ordinary tasks can take considerable effort.

I may look fine - but then fatigue and brain fog hit

Some effects of living with PBC are easier to notice. My brain fog is most noticeable when I’m really fatigued or have been under a lot of stress. I may freeze while trying to remember someone’s name or a detail. I can easily lose my train of thought in conversation.

Sometimes I think my spouse feels as though he’s participating in a game show. He fills in the blanks when the words won’t come!

I find this embarrassing when I’m interacting with others. I know what I want to say, but sometimes my mind stalls. I can’t quickly explain what’s happening. People may notice the pause without knowing what’s behind it.

Why I’m careful about what I eat and how it affects my fatigue

Dietary choices are another visible part of how I manage my health. This is especially true when I’m dining away from home. I’ve found that what I eat can affect my fatigue. So I try to stay on track.

I often scout the menu before leaving home. If I haven’t checked it ahead of time, I usually choose a salad that fits my dietary needs.

Sometimes I ask for a small change to a more complex meal. The waiter may return with additional questions. On occasion, the chef may visit our table. Some of these moments have created entertaining stories for my friends and me. Still, I prefer not to have the attention.

People may notice the care I take with food. That doesn’t show how I’m feeling or how much energy I have.

Planning my days around limited energy

Beyond these visible effects, PBC affects how I use my energy throughout the day. I still want to volunteer, attend events, and explore new interests. I also want to spend time with people I care about. Many days, I’m able to do those things, though I may need to plan carefully.

If I have an appointment or event, I may keep the rest of my schedule light. I may also leave room to regroup afterward. I can’t always predict how much energy an activity will take. I’m learning to adjust so I don’t keep using more “spoons” than I have.

The importance of taking time for myself to rest

Taking time to regroup physically and mentally is part of caring for myself. It can help me feel more like myself and be more present on another day.

I may never have more spoons than I have now. But I can keep learning to be a good steward of the energy I have. Some days that means saying yes. Other days, it means saying no or letting something else wait. Learning to say no has been one of my most difficult challenges.

I’ve finally stopped viewing a needed rest or nap as laziness. I’m learning that even moderate exercise is my friend. And I’m reminding myself that looking fine doesn’t tell the whole story.