Living with chronic pain in a system that profits from it—and choosing, every day, not to disappear.

 

Writing has always been cathartic for me. A kind of therapy. I’ve been keeping some form of a diary since sixth grade.

There is something about putting words to a feeling that makes it feel less like it’s swallowing you whole. Or at least gives it edges. Something you can look at, instead of something you’re trapped inside.

I don’t talk about pain the way people expect.

Not because it isn’t there. It is. Constant. An insistent presence that has long since outgrown the language we tend to use for discomfort. Fibromyalgia. Status migrainosus. Terms that sound clinical, almost tidy, for something that is anything but. Pain that settles into the body and rearranges your life without asking permission. Pain that dictates the terms of your day before you’ve even opened your eyes.

And still, I learned how to make it sound acceptable.

How to translate it into something easier for other people to hear. Something that wouldn’t make them uncomfortable. Something that wouldn’t make me sound incapable.

Because when a woman speaks plainly about her limits, she risks being misunderstood. As lazy. As dramatic. As someone who simply isn’t trying hard enough.

So I tried harder.

I learned how to present “resilience” without ever showing what it costs me. I taught myself graphic design. Built a small online business—successful, at least in spirit, if not yet in a way that pays the bills. I write about the world in my newsletters and blogs because I’ve always loved history, always been drawn to the way power moves, and I want to feel like I’m doing something that matters. And through all of it, I learned how to smile in conversations about productivity. How to nod along to advice that assumes your body will show up for you every day.

But the translation has become exhausting. Because the truth is not only that my body hurts. It’s that I am tired of pretending that it doesn’t change everything.

There is a particular kind of loneliness that comes from living in a body that doesn’t cooperate in a world that refuses to slow down. A kind of quiet grief that doesn’t announce itself as grief, but settles in anyway. In the missed opportunities. The delayed timelines. The constant recalibration.

And layered on top of that is the world itself.

The headlines. The violence. The greed. The way suffering seems to multiply, not diminish. It becomes difficult, at times, to separate what is mine from what belongs to everyone else. Personal pain begins to blur into collective grief. They reflect each other. They deepen each other.

And when I sit with it—my life as it is, the world as it is—a question keeps coming back to me, quieter each time, but harder to ignore: where, exactly, is someone like me meant to stand?

I am a woman in a world that still, in so many ways, runs on terms that were never built for us. I am also someone whose body no longer reliably meets the expectations of a traditional life. The math shifts. The margin for error disappears. But the expectation remains unchanged.

We are told that if we work hard enough, we will be okay.

But no one tells you what happens when you are working as hard as you can and your body still will not meet you halfway. No one tells you how to measure yourself then.

I did what I was supposed to do. I adapted. I built something of my own.

A business, yes—but more than that, an attempt to create a life that could hold me. Something flexible. Something honest. Something that didn’t require me to pretend I was operating at full capacity when I wasn’t.

It was also, if I’m being honest, an act of hope.

Hope that I could build something sustainable. Hope that I could contribute to a world that has historically underfunded and overlooked conditions like mine—conditions that disproportionately affect women and are still treated as secondary concerns in research, in funding, in urgency.

Because the reality is difficult to ignore: the support is limited. The research is insufficient. And the burden of making it work falls, almost entirely, on the individual.

And then there is the cost.

Not metaphorical. Not philosophical. Actual, itemized, recurring cost.  The appointments. The specialists. The tests that lead to more tests. The medications that help just enough to justify their price, but never enough to give you your life back.

The bills arrive with a kind of non-negotiable authority. Clinical language. Clean formatting. Numbers that do not account for context. Or capacity. Or the fact that the body they are billing you for is already struggling to exist.

There is something uniquely disorienting about being physically unwell and financially penalized for it at the same time. About needing care and being priced out of it. About understanding, in real time, that your survival exists inside a system that profits from your inability to function without it.

Pharmaceutical companies report record-breaking profits. Insurance companies expand margins. Entire industries grow stronger, more efficient, more profitable. And still, people like me sit at kitchen tables doing quiet math.

Can I afford this medication this month? Can I delay this appointment? What happens if I don’t?

It is not just financial. It is psychological. Because over time, it begins to shape the way you think about yourself. You start to wonder if your existence is too expensive. If your needs are unreasonable. If your body is a liability you are constantly trying to justify.

There is a particular kind of trauma in that.

In knowing that the systems meant to support you are also extracting from you. In feeling your health become transactional. In realizing that stability is not just something you have to build—but something you have to continually negotiate access to.

And all of it happens behind executive suite doors, with a kind of cold, detached calculation, where profit margins and bottom lines seem to carry more weight than an actual human life. It happens behind closed doors, in patient portals, in billing statements, in the space between what you need and what you can afford. It’s the part no one really talks about, but it changes everything.

Living this way, over time, changes you.

So I tried to make it work. I built. I wrote. I created. Not for excess. Not for recognition. For stability.

To pay my bills. To keep a roof over my head. To take care of myself and the small, corner of life I’ve built. To feed my two cats, who have become, in many ways, the softest proof that something in my life is still steady.

And still…

There are days where it feels like I am falling behind and completely failing forward spectacularly. Not because I’m not trying. But because I am measuring myself against a world that was never designed to accommodate someone like me.

A world that values output over sustainability. Praises resilience but rarely supports it. And a world that calls you strong, when what it often means is: endure this, stay productive at any cost, and never question the standard you’re expected to keep up with.

There are days where the effort required just to maintain a baseline—to stay housed, fed, functioning—feels overwhelming. Where exhaustion is not poetic or metaphorical, but physical. Absolute. Non-negotiable.

And it is difficult to admit that without feeling like you are confessing some kind of personal shortcoming. But I don’t believe it is a failure to acknowledge reality. I don’t believe it is weakness to say: this is unbelievably hard.

If anything, I think it is one of the few honest things I have left.

Because the truth is, I am not trying to be extraordinary. I am trying to be stable. And that should not be an unreasonable goal. It should not feel out of reach. And yet, for so many people—people navigating illness, disability, financial instability, systemic barriers—it is.

I think about that often. About how many people are living in this same constant negotiation with their lives—shaped by uncertainty, by fear, by the reality of not knowing if what they have will be enough. Measuring energy. Measuring time. Measuring what they can give without losing themselves entirely.

I think about how many of us are asking the same question, in different ways:

Am I meant to survive in a world like this, or is the point to break people like me?

Not in theory. Not in rhetoric. But in practice. In structure. In reality.

I don’t have a clean answer to any of this. What I do know is that I’m still here, building a life that fits within the limits I didn’t choose. Some days that feels manageable. Some days it doesn’t. There are days I honestly question whether I can keep doing this at all—when the pain is constant, when the bills don’t pause, when the effort it takes just to get through a day feels out of proportion to what I have to give.

But the alternative isn’t simple. There are still things that need tending. A body that needs care, even when it resists me. A home that needs to be kept. A life, however small or imperfect, that is still mine to maintain.

So I keep going. Not because it feels meaningful or admirable, but because at the end of the day...it’s still mine.

With Care.

Tasha Monroe
Founder, Simply Edyn & Co.
simplyedynandco.com 

 

For those living with pain, I’ve created a small space here:
https://simplyedynandco.com/collections/this-hurts