Your Stories: The Mask I Wear

by Anonymous

I was seventeen when my spine started to stiffen. The pain began as a dull ache in my lower back, then spread to my pelvis and hips. When the doctor said axial spondyloarthritis, I didn’t know what it meant. I just knew it sounded permanent.

Since then, I’ve been wearing a mask. Not the kind that hides your face. The kind that hides your truth. Mine is made of tight smiles, casual shrugs, and the phrase “I’m fine” said too many times to count.

When I wake up, it’s like my body has forgotten how to move. My joints feel rusted shut. Sometimes it feels like someone twisting a knife in my hips just to remind me who’s really in charge (hint: it’s not me). But once I step outside, I straighten up as much as I can and pretend I’m just another guy in his twenties living his best years.

The truth is, pain doesn’t fit into the version of masculinity a lot of the world still expects. Even the most “evolved” people in my life still tease me or suggest I’m too sensitive to pain. People tell me to work out more, change my diet, get more mentally tough, or stop complaining.

I haven’t dated much since my diagnosis (read: I haven’t dated much at all). It’s hard to let someone close when you’re hiding parts of yourself. I’ve lost count of how many times I’ve said, “I’m just tired,” instead of “Every step hurts.” Or I pretend it doesn’t hurt. Sometimes it doesn’t seem worth the effort.

But recently, I’ve been seeing someone. She has a demanding job, and we have to commute to see each other, which some people wouldn’t like, but it works perfectly for me. We have to really plan out when to see each other, so I can usually arrange our visits around flares or close to when I know my medication will have kicked in. A few weeks ago, she asked if I wanted to make plans for the holidays. I hesitated, and she thought I just wasn’t into the idea, or that into her. What she didn’t get—what I couldn’t find the words to explain—was that a three-hour drive to her Friendsgiving might be two hours too long in a car for me.

It was in my online community for “spondys” that I found the language to tell her the truth. I’m anonymous there. That anonymity gives me the freedom to say all the things I’m ashamed to say in real life. It’s where I learned to say, “It’s not about you; it’s about pain.” I told her that, finally, and I think she understands, for now, at least.

I tell myself that the mask protects me. That it keeps my world intact: my relationships, my career, my pride. But lately, I’ve started to wonder if it’s also suffocating me. Because behind the mask is someone tired of pretending. Someone who wants to believe that vulnerability isn’t the opposite of strength.

And yet, I can’t see myself taking the mask off anytime soon. The truth is, it feels too risky. In that online space, surrounded by strangers who somehow understand me better than most people in my real life, I can take the mask off, even if only for a few sentences at a time, and breathe. Maybe that’s enough for now. I’d like to believe that someday I’ll be brave enough to live that way in the real world. Until then, I’ll keep the mask on and hope that behind it, I’m becoming someone honest enough to at least admit I’m wearing it.