Not All Pain Is Visible: Living with Invisible Illness and MS Behind the Mask
“You’re always so positive.”
I’ve heard that more times than I can count. Usually from people who see the version of me that shows up, smiles, makes jokes, gets through the day without complaint. People who see me pushing through assume I’m strong. That I’ve got this figured out. That MS hasn’t really changed me that much.
They couldn’t be more wrong.
The truth is, what most people see is the mask. The version I’ve built to make others comfortable. The part of me that keeps going, even when my body is screaming to stop. The part that keeps smiling because it’s easier than explaining. The mask is neat, put-together, inspiring.
Behind that? It’s messy. It’s fatigue that hits like a freight train at 9 a.m. It’s forgetting what I was saying mid-sentence, and pretending I was done talking. It’s waking up stiff, sore, and unsure if I ll be able to feel my feet. It’s the guilt of canceling plans again. It’s the grief of losing the version of myself I used to be.
People think that because I look normal, I must feel normal. They see the bike rides, the work meetings, the social media posts. What they don t see is the crash afterward. The hours spent recovering in silence. The moments of doubt. The quiet breakdowns.
The most exhausting part of living with MS isn’t always the symptoms it’s the constant need to perform wellness for other people. To reassure them. To protect them from the reality I live with. Because if I drop the act, if I say how I really feel, things get uncomfortable. People don t know what to say. They either pull away or hit me with toxic positivity: At least it’s not worse, you’re so strong, or You got this!
Here s the thing: I don t always got this. And strength doesn’t mean I’m not struggling. Most days, it’s both.
There’s a pressure to be the brave one. The one who inspires. But sometimes I don t want to inspire anyone. I just want to exist without being doubted, questioned, or held to some invisible standard of courage.
I’m not writing this for pity. I’m writing it for the people who live behind the same kind of mask. The ones who are tired of pretending they’re fine just because it makes things easier for everyone else. If that s you, I see you. I am you.
What I hope people take away from this is simple: don t confuse someone s public strength with their private reality. Don t assume just because someone is showing up, they’re not struggling. And if someone tells you what they’re going through, believe them even if they don t look sick.
Because the truth is, invisible doesn’t mean imaginary. And strength doesn’t mean unbreakable.
