The body and mind are terrorists when they turn against you.

That’s the best way I can describe it on most days. The pain is one thing. But it’s the psychological warfare that wears you down. The gaslighting from your own nervous system, the exhaustion from holding yourself together in a world that does not bend for the unwell, and the constant recalculating of how much effort you can afford just to be alive.

I live with chronic illness. Invisible, unpredictable, and unapologetic. And I’ve stopped trying to make it inspiring. I’m not a phoenix. I’m a person. And some mornings, the win is just getting vertical.

I was angry for a long time. Angry at my body, angry at doctors who brushed me off, angry at people who meant well but said things like “at least it’s not cancer” or “have you tried yoga?” as if my cells could be negotiated with through optimism or deep breathing. The rage was thick. It calcified into a kind of armor.

But at some point, something shifted. I stopped looking for a cure and started looking for a life. A real one. One that could hold both the joy and the reality of what it means to live inside a body that doesn’t follow the rules.

I don’t need to be cured to be whole.

Still, let’s not confuse acceptance with peace. There’s nothing peaceful about watching your independence erode in slow motion. There’s nothing calm about calculating the cost of every social event in spoons and trying to decide whether a birthday party is worth three days of pain. There’s no serenity in budgeting for mobility aids when your insurance thinks your suffering is elective.

Living with chronic illness is lonely in a very specific way. It’s the loneliness of missing your own life in real-time. It’s the ache of being present, but not fully participating. It’s the quiet heartbreak of watching the people you love not know how to include you anymore, because illness makes people uncomfortable, and discomfort makes people disappear.

I’ve made peace with the cards I’ve been dealt. That doesn’t mean I like them. It means I’ve stopped folding every time the pain comes back.

We don’t talk enough about the mental health cost of being sick. The quiet despair. The medical PTSD. The guilt. The pressure to perform okay-ness so people don’t drift. The internalized shame of not being “productive” enough. It’s a grief cycle with no final stage, just a rotating door of bargaining, adapting, surviving.

And still, here we are. Not broken. Not less. Just living a different kind of math. A different kind of strength.

You don't have to romanticize the fight to survive it. You don’t have to smile through it to be brave. And you don’t have to be seen to be real.

I am real. This pain is real. And so is this life I’m building. It’s small, it’s deliberate, and it’s sacred in ways that don’t always need words.

Sometimes, I think the pain is proof that I’m still here.

It sounds strange. I know. But when everything else feels out of reach—when the plans fall apart, when the body forgets how to function—what remains is sensation. Sharp. Persistent. Sometimes humiliating. But real. And in its own defiant way, it reminds me that I’m still alive. Still able to choose. Still able to try. Still able to appreciate love and beauty.

Being sick doesn’t mean I stopped dreaming. That’s another part we don’t talk about enough. The assumption that illness must cancel ambition. That once your body betrays you, your purpose dissolves too. But I’m still a writer. That hasn’t changed. It’s just the scaffolding around the dream that’s shifted. I used to believe I could outrun everything. Racism, poverty, patriarchy, pain. I thought I could write my way out. Work my way free.

But when your body breaks down, the control you once held slips. Everything feels fragile. Your routines, your income, your love life, your sense of possibility. And suddenly the world becomes a place shaped more by fear than freedom. Especially for someone like me. A Black woman who spent her whole life struggling and pushing back against erasure. Who refused to think small. Who strived to live loud on purpose.

Now, at 42, I’m being asked to imagine a new kind of life. A different rhythm. A new “why.” One that isn’t rooted in proving I belong, or bending to expectation, or burning myself out to outrun the reality of illness.

I don’t know exactly what that looks like yet. And I’d be lying if I said I wasn’t scared. I am. I’m exhausted. But there’s still something in me that hasn’t let go. A quiet, stubborn part of me that insists there’s more. More to say. More to give. More to live for.

And maybe that’s the truest thing I’ve ever written: I still want this life.

Even like this.

Even now.

Written by: Tasha Monroe

Founder, Simply Edyn & Co.

Editor & Writer, The Commons Dispatch

This piece is part of The Commons Dispatch.

Twice a month, we sit with the hard stuff that require reflection, resistance, and viewing the world as it actually is. It’s not perfect, but it’s honest. From Simply Edyn & Co., for whoever’s still listening. 

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