Most days, I don’t think about how I look to others. I go to meetings, run errands, and talk to people, and my body is just... my body. It works well enough, and I feel relatively normal.
But fibromyalgia and ME/CFS are unpredictable. There are days when symptoms flare, or when energy runs low, and suddenly, appearing "normal" is no longer automatic. It becomes something you have to do on purpose.
That’s when the performance starts.
The Hidden Work of Masking
When you have a visible injury - like a broken leg - people can see the cast. They adjust their pace to match yours. But when your symptoms are invisible, the weight of adjusting falls entirely on you.
On a hard day, looking fine is an active project. You adjust how you're sitting so you don't look like you're dragging. You control your facial expressions so a sudden spike of nerve pain doesn't show as a wince. You nod and smile while your mind is sorting through brain fog, trying to find the thread of the conversation.
We do this because it keeps things smooth. It avoids the exhausting explanations of why we are tired or why we need to sit down. But performing "fine" when you aren't has a real price tag.
The Hidden Cost of Hiding It
Here’s the thing about hiding symptoms: it’s not neutral. It costs your brain a lot.
Research on how the brain handles pain suggests that actively masking pain or fatigue uses the same brain power we need for focus, memory, and decision-making. When you are forcing your brain to push down what you're feeling so you can sound pleasant, you have less brain power left for the actual conversation.
For people with ME/CFS, this mental effort of hiding can actually trigger post-exertional malaise (PEM). It’s not just the physical movement that drains you; it’s the mental effort of pretending everything is normal. The exhaustion you feel afterward isn't just physical - it's the mental receipt for a performance you had to pay for in advance.
Checking Your Performance
Because these hard days only happen sometimes, it's easy to treat masking as an automatic habit rather than a choice you make on purpose. We get so used to putting on the "fine" face that we do it even when we don't need to.
But we can choose when to run this script.
The next time you're having a difficult day and find yourself performing, stop and run a quick check:
- Is this performance a must right now? (e.g., in a client meeting or a job interview).
- Or am I doing it out of habit for friends or family who would actually be fine seeing me a little tired?
We don't have to throw away the mask completely. Sometimes it’s a useful shield. But recognizing that it is an expensive tool - one that we only need to use when it truly serves us - lets us save our energy for the things that actually matter.
What would happen if you let the performance drop just a little today?
