Learning to live inside it

by Nina Ajdin

There was a morning recently when I woke up and couldn’t open my eyes properly.

Not tired. Not groggy. Actually couldn’t open them. The skin around them had tightened overnight, crusted, swollen, the kind of thing that makes you understand, viscerally, what it means to be trapped inside your own body. I lay there for a while, ice pack on my face, eye patch on, listening to the house wake up around me. Someone made coffee. A door opened and closed. Outside, birds. Life just continuing, the way it does, completely indifferent to the fact that I was lying in bed unable to see.

That’s been my month. That’s been, in many ways, my life. I have Topical Steroid Withdrawal, TSW. If you know, you know. If you don’t: it’s a chronic condition that can last years, sometimes over a decade, marked by waves of skin that burns, weeps, itches, tightens, and cycles through all of it again. I’m fourteen years in. This is not my first flare. It won’t be my last. But something is different now than it was at the beginning.

The way it used to feel

In the early years, every flare felt like the end of the world. Not metaphorically. I mean I genuinely believed, each time, that this was it, that I had finally crossed into the version of this illness I would not come back from. I would lie in bed and think: this is how it stays. This is my life now. The fear was total. The suffering was total. There was no separation between me and it. I would get through a flare eventually, and the relief was enormous. Sometimes I’d cry with gratitude just to be outside again, just to feel the air on skin that wasn’t screaming. But even the relief carried the shadow of knowing it would come back. So I would brace. And brace. And wait. Living braced is exhausting. It is its own kind of suffering.

What fourteen years teaches you

Somewhere along the way, I couldn’t tell you exactly when, something shifted. Not the illness. The illness is still the illness. It still comes without warning, takes what it wants, and leaves on its own timeline. I don’t control that. I never did. What shifted was something inside me. I stopped waiting for it to be over before I started living. I stopped treating the flare as an interruption to my life and started understanding it as part of my life, a painful part, an unwanted part, but mine. Something I move through rather than something that happens to me. I learned, slowly and without meaning to, how to exist inside it.

What that actually looks like

It doesn’t look heroic. I want to be honest about that. It looks like lying in bed with an eye patch on, listening to a podcast about Taylor Swift because that’s all my nervous system can hold. It looks like three bites of soup because that’s what I can manage. It looks like asking for ice and not getting the response I needed and crying anyway, and then the crying being okay, being the right thing, being what my body needed to do. It looks like texting someone for support on the worst days. It looks like accepting help I didn’t ask for, my dad making pureed fruit when my mouth hurt too much to eat. It looks like small, unglamorous acts of continuing.

What it doesn’t look like anymore is the belief that this is permanent. That shift, from this is forever to this will pass, it always does, is the most significant thing fourteen years has given me. Not toughness. Not resilience in the Instagram sense. Just evidence. Accumulated, embodied, undeniable evidence that I have gotten through every single flare before this one. My body knows what it’s doing even when I can’t see it. Even when the doing looks like lying still.

The loneliness no one talks about

Here is the thing that took me the longest to name. The hardest part of living with a chronic illness is not the pain. It’s the particular loneliness of being in pain while surrounded by people who love you, and still feeling completely alone. Because pain is private in a way that’s hard to explain. It happens inside your body, in a language that doesn’t translate. You can describe it, burning, itching, tightening, aching, but the description is never the thing itself. There is always a gap between what you’re living and what anyone else can receive.

And for those of us who feel things deeply, who absorb the emotional atmosphere of a room, who can sense what’s unspoken, who have nervous systems that seem to process everything at full volume, that gap is its own kind of suffering. You want to be met inside it. Really met. Not fixed, not reassured, not told it doesn’t look that bad. Just seen. Acknowledged. Held in it, even briefly, by another person. Sometimes that happens. Often it doesn’t. And learning to exist inside that loneliness too, to not be destroyed by the gap between what you need and what you receive, is its own long education.

What I’m still learning

I am not on the other side of this. I want to be clear about that. I’m writing this from inside a flare. Right now. Skin uncomfortable, eyes still recovering, tired in a way that goes past the physical. I am not writing from a place of having figured it out. I’m writing from a place of having lived it long enough to know that it passes. That the version of me who is writing this will, at some point, be outside on a walk feeling the air on her skin and thinking: I made it through that one too.

That’s not nothing. In fact, in fourteen years, I’ve come to understand that that is almost everything. The faith isn’t blind. It’s earned. Built from the evidence of every flare I’ve survived, every morning I couldn’t open my eyes and then, eventually, could. Every time I thought I had reached the limit and found, somehow, that I hadn’t.

If you’re in it right now

Maybe you have TSW. Maybe you have something else, another illness, another kind of suffering, another thing you’re learning to live inside rather than waiting to escape. Maybe it’s not physical at all. Whatever it is, I want you to know that learning to exist inside it is not giving up. It is not accepting that this is forever. It is not making peace with something that doesn’t deserve your peace. It is just survival at a higher resolution. Learning to be fully alive inside the hard thing, rather than holding your breath until it’s over.

Your body knows what it’s doing. Even when the doing looks like lying still. Even when the only thing you can manage is the next hour. That is enough. You are enough. And this, whatever this is for you, it will pass. It always does.

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