There is a kind of education that only comes from your body demanding your full attention. It’s not one you go looking for, but the kind that finds you. Mine found me at 35 years old, on a CT scan ordered for something else entirely. An abdominal scan, looking for something unremarkable, happened to catch my lungs in the frame. What it found changed everything.

LAM, also known as Lymphangioleiomyomatosis, is a rare, progressive lung disease that affects primarily women of childbearing age. Most people have never heard of it, and until that afternoon in my doctor’s office, I was most people. I won’t go into the full clinical details here, but if you want the full picture the LAM Foundation is the place to go. What I will tell you from living with LAM is that it’s the kind of diagnosis that divides your life cleanly into before and after.

I am lucky in ways I didn’t fully appreciate back then. Sirolimus, the first FDA-approved treatment had just come through. My diagnosis was caught early enough to matter and the medication has worked well for me so far, which is not everyone’s experience. The prognosis for LAM has shifted dramatically in the last two decades, from very grim to manageable for many women. While there is treatment now, there is no cure.

I share this not for sympathy, but because everything I know about living in a body, about caring for one, about making peace with one, runs through this diagnosis. It is a lens I can’t shake off. And as it turns out, it has made me a better steward of my own body than I ever would have been otherwise.

What a rare disease teaches you about ordinary things

When your body presents you with something serious, the trivial complaints lose their grip.

I don’t mean that in a toxic positivity way. Chronic illness is not a gift and is definitely not something I would choose, recommend, or romanticize. What it is, is something that strips away a lot of the other noise, the constant hum of dissatisfaction most of us carry of our bodies being not quite good enough.

When you’ve had to fight for function, when you’ve sat with a diagnosis that has the word progressive in it and learned to hold that without falling apart, when you’ve had to adapt your entire life around what your lungs can or can’t do on a given day, you don’t have the energy to spend on things that don’t deserve it.

The mental real estate I used to spend cataloguing what was wrong with my body doesn’t take up space the way it used to. I wish it was because I achieved some enlightened state of self-love, but its because I have more important things to do with it. That’s not to say I don’t worry about how my stomach looks in a certain dress or want to lose the last 20 pounds, but it’s not the priority anymore.

That reallocation is one of the only useful things chronic illness gave me. Its available, in smaller doses, to any woman willing to ask herself where her attention is worth going.

The rules change in midlife whether you have a diagnosis or not

The thing about LAM and perimenopause arriving in the same chapter of a woman’s life is that they are both, at their core, about learning that the old rules no longer apply. The body that hummed along without much intervention at 28 requires a different relationship at 45. Hormones that operated quietly in the background are now making themselves known. Sleep that came automatically needs special considerations. Recovery takes longer; anyone over 40 who has had the unfortunate experience of a hangover can tell you that. The same inputs produce different outputs, and the difference can feel like betrayal if you’re still expecting the old contract to hold.

It doesn’t hold and that’s not a flaw; it’s biology.

Women with LAM are generally advised against HRT, which means I’m navigating perimenopause without one of the primary tools in the toolkit. That has required me to pay closer attention to everything else: sleep, stress, nutrition, movement, nervous system regulation. I didn’t choose to be a wellness overachiever, but I don’t really have the option not to be.

The women doing well in midlife, with or without chronic illness, aren’t the ones who follow the perfect protocol. They’re the ones who got curious about their own bodies instead of staying at war with them. My curious nature has served me well in this aspect. Curiosity is highly underrated as a health strategy and will help you better advocate for yourself.

The problem with the before body

We all have a reference body, the body we had previously that we decided was the correct version. You know, the one we’re always trying to get back to in some way.

For most women, that reference body is somewhere in their 20s or early 30s, before the pregnancies or the diagnoses or the decades of chronic stress. Before the hormones went haywire and before whatever made the body feel like it stopped cooperating. One thing about that reference body though, she didn’t know what this one knows.

The body I had at 34, a year before my diagnosis, was objectively healthier by clinical standards. It was also completely taken for granted. I didn’t appreciate it, I didn’t care for it well, and I spent too much time and energy dissatisfied with it. If I could go back, I’d wouldn’t tell myself to enjoy it while it lasts, but to pay attention. To stop treating my body like an inconvenient container for my spirit.

The body I have now with a rare lung disease that’s navigating perimenopause without HRT is in a healthier relationship than it has ever been. That’s not despite the hard things, but in some way, because of them.

What caring for yourself actually looks like when it’s not about looking good

The wellness industry (and the patriarchy) have a vested interest in keeping you dissatisfied. Dissatisfied women buy things, are afraid to take up space, and are focused on trivial things. Women who have made peace with their bodies are considerably more dangerous and less profitable.

I have to be clear about why I do all of the things I do, like the strength training, the magnesium, the sleep hygiene, the attention to what I’m eating and how often I move my body. It’s not to look a certain way; it’s because I want to be functional for as long as possible. I want to carry my own groceries at 80. I want to get up off the floor without it being a whole thing. I want my lungs, which require extra care, to have every possible advantage I can give them.

The motivation of function rather than appearance changes everything about how the work feels. When you care for your body because you respect what it does, not because you’re trying to fix how it looks, it gets quieter. The decisions get clearer. You stop asking what will make me thinner and start asking what will make me stronger, more resilient, more capable to live the life I want to live.

Those questions lead somewhere worth going.

The body you have is the one worth knowing

I was diagnosed with a disease most people have never heard of, that was found by accident, that has no cure, and that I will manage for the rest of my life. I have in the years since built the most honest and functional relationship with my body that I’ve ever had. That’s not by coincidence.

The body you have right now that’s changing and requiring more of you than it used to, the one that might be carrying something hard, is not a consolation prize. It is the body that has been with you through everything. It has earned your attention, maybe even your affection.

If a rare lung disease taught me anything, it’s that I was always the rare and special one. I just needed the reminder, although I would have accepted a different one.

Have you had a moment that changed how you see your body? Comment or message me, I read every reply.