The Chronic Illness Mask Show: Starring Me, Again

By Antonia @ Unremarkable Me

Fun fact: I can tell you exactly when my voice slips into “I’m fine” mode. It’s usually about four seconds after someone asks how I’m doing, and I know they don’t really want the answer. You know—because telling the truth means watching them awkwardly blink at me like I just confessed to being a lizard queen.

Welcome to the performance of a lifetime. This show runs daily, has no intermission, and features a dazzling lead actress (hi) playing the role of “chronically ill but emotionally manageable.” There’s smiling through pain, upbeat texts sent from hospital beds, and a scene where I casually pretend I didn’t just nearly faint getting out of the shower.

This is masking—the chronic illness edition.

What Is Masking? And Why Do We Do It?

In neurodivergent spaces, masking usually refers to the unconscious effort to suppress symptoms or behaviours to blend in socially. But in chronic illness territory, it’s more like emotional gymnastics. You curate a version of yourself that’s more digestible, less exhausting for others to handle, and frankly, easier to invite to parties.

According to Psychology Today, masking is “a strategy of concealing one’s symptoms or experiences to avoid stigma, discomfort, or judgment.” For those of us with invisible or complex health conditions, it often becomes a survival tactic. We hide the reality to protect relationships, jobs, or the delicate balance of not being reduced to that friend—the one who’s always sick.

Masking with a Partner: Love, Lies (of Omission), and Guilt

When I first got properly sick—the kind of sick that eats years, not days—I tried to protect my partner, Sam. He’s already navigating his own health battles, thanks to Type 1 Diabetes and its full buffet of complications. So I thought, well, no need to drown him in my mess, too.

Spoiler: it didn’t work. Turns out, when you’re holding back tears on the kitchen floor while saying “I’m just tired,” the person who loves you can tell. And when you keep doing it, over and over, you stop being emotionally available—not because you’re cruel, but because you’re just so busy holding it all in.

And here’s the kicker: it was disrespectful. Not intentionally, but still. Sam never asked me to lie. He never needed me to pretend I was okay. He just wanted to know—so he could walk alongside me.

I masked to protect him, but all it did was isolate me.

Masking with Friends: The Pity-Avoidance Pipeline

There is an emotional shelf life to being “the ill friend.” At first, people are wonderfully supportive. You get concerned messages, “thinking of you” flowers, and sympathy-laced conversations. But somewhere along the line, the tone changes. You go from “brave” to “bit of a downer,” and before you know it, your texts are going unanswered.

I’ve noticed I only have so many “truth tokens” with certain friends before the energy shifts. I tell them how bad things are, and their faces fall—not because they don’t care, but because they do. And caring is uncomfortable when there’s nothing they can do to help.

So, I mask. I say, “I’m doing okay,” when I’m surviving on three hours of sleep and meds that make me forget what my own name is. I say, “Let’s hang out soon!” knowing full well my spine is auditioning for a horror film and my head feels like it’s leaking out the back.

But masking doesn't build closeness. It builds performance. And eventually, I don’t even remember who I can be real with anymore.

Family, Karen, and the ‘Head Thing’

Let’s talk about family. Specifically, your mum’s friend Karen.

You know Karen. Apparently, she has “what I have” and she’s “doing just fine.” She goes hiking and hosts dinner parties and hasn’t so much as sneezed in a decade.

Meanwhile, I’m sitting there trying to explain that Ehlers-Danlos Syndrome isn’t a singular, uniform experience and that my Chiari malformation isn’t just a “headache problem”—it’s literally my brain auditioning for The Great Escape: Skull Edition.

But people don’t want nuance. They want tidy, relatable, easily resolved stories. And chronic illness doesn’t do tidy. It does messy. It does complicated. It does, “I can walk today but might need a wheelchair tomorrow, and no, I’m not making it up for drama.”

The worst part? After too many Karen comparisons, you start pre-emptively masking just to avoid the conversation. Because it’s easier to say “yeah, I’m good!” than to educate people for the thousandth time while they zone out halfway through the word cerebellar tonsillar herniation.

The Emotional Cost: Loneliness, Identity, and Burnout

Masking takes a toll. Not just physically—though god, the crashes are real—but emotionally. You lose touch with people. And with yourself.

It’s hard to maintain intimacy when no one actually sees what you’re going through. Harder still to remember who you are when every version you show is tailored to someone else’s comfort.

The Mighty describes this as “living a double life.” And that dual existence becomes exhausting. Especially when people say things like, “But you looked fine last week.” Yes, Karen, because I was performing like my social life depended on it—which it sort of does.

Eventually, you start to wonder if anyone could ever love the unfiltered, unperforming version of you.

And that’s the most brutal part. Not the pain. Not the fatigue. The fear that your truth is too much.

Unmasking: Terrifying, Necessary, Freeing

I’m still learning how to unmask. It’s awkward. It’s messy. Sometimes I overshare. Sometimes I retreat too fast and regret it. But I’m learning.

Here’s what helps:

• Therapy, especially with professionals who understand chronic illness (check out Therapists for Chronic Illness UK or Counselling Directory)

• Support communities like EDS UK, The Mighty, and Chiari & Syringomyelia Foundation

• Journaling, to remember what your real voice sounds like

• People who stay—the ones who sit with you, no fixing, no flinching

And to be clear: unmasking isn’t about trauma-dumping on everyone or becoming a walking diagnostic code. It’s about being honest enough that you don’t lose yourself in the performance.

It’s about being seen—and knowing that you still have value even when you’re not “palatable.”

Curtain Call

So yes, this is the chronic illness mask show. And I’ve been starring in it for years.

But maybe, just maybe, I’m ready to let the curtain fall a bit. Not all the way. Just enough to breathe. Just enough to stop smiling when I don’t feel like it. Just enough to stop trying so damn hard to be digestible.

And if that means fewer people clap? That’s okay.

I’d rather be real than applauded for a role I never auditioned for.

Resources & Support

• Ehlers-Danlos Support UK

• Chiari & Syringomyelia Foundation

• The Mighty – Chronic Illness Community

• Therapy for Chronic Illness (UK)

• Counselling Directory – Chronic Illness Therapists

• Versus Arthritis – Talking to Others About Pain