When grief follows disability: Finding life again

Guest blogger: Lillian Brooks

You think you’ll handle it. You think, “Okay, this happened. I’ll adapt.” Maybe you even say it out loud. But the part no one mentions is what comes after — the ache, not just in the body, but in the silence, in the change, in the way the world no longer fits right. You don’t just lose mobility or strength or stamina. You lose familiar rhythms. You lose the ease you didn’t know you were counting on. And then grief shows up. Not the dramatic kind, but the quiet, daily kind that clings to the edges of routine and memory. This kind of loss doesn’t come with ceremonies or casseroles. But it’s real. And, over time, it can shift. Not vanish — shift.

Experiencing the Initial Transition

It doesn’t matter whether it happens all at once or creeps in slowly — one day you realize the ground rules have changed. Your hands don’t work the same. Your legs, your back, your lungs — they’ve got different priorities now. And with that shift, something else moves too. Confidence maybe. Or certainty. You can’t just push through anymore. You have to plan things you used to do without blinking. Showering becomes logistics. Stairs turn into strategy. You tell yourself to be strong, but inside, it feels like you’re walking underwater, pretending not to drown. People mean well, sure, but even their kindness can sting. Because underneath it all is this raw question: “Am I still me?”

Recognizing Changes in Identity

You ever miss yourself? Not just how your body used to work, but how you used to walk into a room? The way you moved, what you could carry, how you laughed without needing to calculate energy for the next day? That version of you — the one who didn’t think twice — isn’t dead, but she’s not exactly here either. It’s weird, grieving your own past. The world keeps telling you to “accept,” but what they don’t get is that acceptance isn’t a single moment. It’s a hundred tiny funerals for things no one else even noticed. And it’s okay to miss that version of yourself. Not because she was better. But because she was yours.

Exploring Expression Through Creativity

Some days, you want to say something — not out loud, not on paper — but through color, shape, feeling. Maybe you used to paint. Or maybe you never did. Doesn’t matter. These days, even that can feel far away — the brushes, the mess, the setup. But there’s this other way in. With an AI painting generator, you can just type what you feel. Something vague, something strange, something you didn’t even know you were carrying — and suddenly, there it is on screen. Like watercolor, or oil, or something dreamlike in between. You can shift the tone, dim the light, try a hundred versions. No pressure. Not perfect. Just a way to translate what's inside.

Managing Ongoing Emotional Impact

Here’s the thing they don’t put in the brochure: sometimes the grief doesn’t end. You think you’ve found your footing and then — surprise — new symptoms, a new specialist, a new set of meds that change your sleep, your appetite, your mood. It’s not that you’re not trying. You are. But your body keeps rewriting the rules. And every time it does, the grief resurfaces. You’re not back at square one, exactly. More like a weird version of two steps forward, one sideways, another in the dark. Living with a chronic condition means living in a kind of suspended uncertainty. You get good at adjusting, but that doesn’t mean it doesn’t hurt.

Establishing New Sources of Meaning

Forget everything you’ve been told about “finding meaning” like it’s some scavenger hunt. This isn’t about forced gratitude or pretending to love silver linings. It’s about noticing, slowly, what still works. What still feels like you. It’s about figuring out what matters now — maybe less noise, fewer people, more quiet mornings or slower afternoons. You might find yourself drawn to different things: conversations that go deeper, moments that hold still longer. You’re not rebuilding your old life. That’s gone. You’re building a new one with different tools, different stakes. And that doesn’t make it less full. Just... not what you expected. But still worth the effort.

Accessing Emotional and Social Support

Let’s be honest. People say “reach out” like it’s easy. Like it doesn’t come with risk or exhaustion or the fear of being misunderstood. But here’s the truth: the right people? They get it. They don’t flinch when you talk about anger or fatigue or the weird mix of guilt and envy when watching able-bodied folks run across the street. Maybe it’s a support group. Maybe it’s a voice in a podcast or a book that says, “Me too.” Sometimes, the people who help the most are strangers first. What matters is finding someone, somewhere, who knows the landscape. So you don’t have to map it alone.

Eventually, the ache dulls. Not disappears — that’s not how this works. But it fades into the background, making space for other things. A slow cup of coffee. A laugh that feels like a surprise. A project you didn’t think you had energy for. You stop measuring your life by what it used to be, and start noticing what it is now. Not better. Not worse. But real. Full. Changed. And if that feels strange sometimes, that’s okay. You’re not broken. You’re becoming.

[Visual from preview page: A woman wearing a blue button-down shirt and white pants with her hair pulled back sits in a wheelchair in a kitchen.]