When Your Body Breaks the Rules: Living (and Grieving) with PCOS
The untold reality of PCOS, grief, and the myth of control
I was sixteen when they told me.
It was 1995. PCOS wasn’t something people really talked about in health class, or sleepovers, and certainly not in the glossy pages of Seventeen magazine.
It wasn’t a popular diagnosis. It was a quiet sentence spoken without eye contact:
“You’ll probably never have children.”
That was all they gave me.
No explanation. No treatment plan.
Just a bleak warning and a prescription for birth control.
I didn’t really even know anything was wrong yet.
I just figured I was one of the girls with painful periods.
But something about the way they spoke, like it was already decided, made me want to understand more than they were telling me.
So I did what we all did back then.
I sat in front of the family computer, waiting for dial-up to connect, searching for scraps of information that made sense.
All I could find were message boards and medical terms I didn’t know how to pronounce.
But I learned enough to know that no one really understood this thing, not even the people diagnosing it.
Since then, I’ve lost count of how many times someone told me to “just have a hysterectomy.”
As if that would solve it. As if the pain was the only part of me causing trouble.
As if I were just a problem to be cleaned up.
As if giving up on the idea of being a mother, before I had even graduated high school was even an option
For a long time, I believed I could fix it.
I tried everything I could.
Supplements. Diets. Doctor after doctor.
I adjusted what I ate, what I wore, how I moved. I tried to become a person my body might finally respond to.
But PCOS doesn’t play by the rules.
And when your body breaks the rules, people start acting like it’s your fault.
You just need to cut back on your calories.
Exercise more!
You’re so sensitive.
No one told me that a hormone (or more accurately, a metabolic) disorder could unravel your mental health.
That it could tighten the grip of anxiety, stir up emotional chaos, or push a sensitive nervous system into constant overload.
That it could amplify symptoms that already came with a name: borderline, disordered eating, fatigue, fear.
That it could take over your life in ways you can’t explain to anyone who hasn’t lived it.
And underneath all of it, grief.
Not just the grief of fertility.
The two miscarriages I wasn’t supposed to mourn so deeply because “at least you weren’t that far along” or worse, “it was just a chemical pregnancy.”
The grief of a body that doesn’t play by the rules.
The grief of trying so hard to control something I didn’t break.
This isn’t a checklist.
It’s not a list of what to eat or which supplement works best.
This is something else.
It’s the story I wish someone had told me.
And maybe, the one you need too.
PCOS Isn’t Just One Thing
When you first hear the name, Polycystic Ovary Syndrome, you’d think this was a problem with your ovaries.
That’s what I thought too.
But here’s the thing no one told me in that doctor’s office back in 1995:
PCOS isn’t really about cysts. And it isn’t just a reproductive disorder.
Yes, some people with PCOS have cysts on their ovaries. Yes, some people have fertility problems. But neither of those things is required for a diagnosis, and they are certainly not the root cause. They are a symptom. A visible side effect of a deeper issue occurring within the body.
What we now know, though it’s still rarely explained this way, is that PCOS is actually a complex metabolic and endocrine disorder.
It impacts the way your body regulates insulin, inflammation, and androgens (male hormones like testosterone, which everyone has to some degree).
It’s not “just” about periods or fertility. It affects your energy. Your skin. Your sleep. Your blood sugar. Your digestion. Your mood.
It affects the way your body stores fat, builds muscle, and processes food. It even affects the way your brain handles stress.
But because of its name, and the outdated ways it’s been diagnosed for decades, most people still think PCOS is only about irregular periods and trouble getting pregnant.
That misunderstanding has caused a lot of harm.
Many of us were dismissed for years. Told to “just lose weight” or “come back when you want a baby.” That that being tired, anxious, bloated, or foggy was probably just stress. That if we did everything right, we’d feel better. But that’s not how PCOS works. Hell, it wasn’t until I was in my 40’s that a doctor sat me down and told me that because I have PCOS I would have to work six times harder to lose weight than people without.
There’s no one-size-fits-all version of this condition.
Some people have regular cycles and still meet diagnostic criteria.
Some are lean and insulin-resistant.
Some are high-androgen. Some aren’t.
The symptoms can shift over time, and for many of us, it feels like chasing a moving target.
Even the diagnostic criteria is debated.
Doctors often rely on something called the Rotterdam Criteria, which requires two out of three signs:
irregular or absent ovulation
elevated androgen levels
polycystic ovaries on ultrasound
But these guidelines leave out key issues like metabolic dysfunction, inflammation, mental health, and long-term risk of diabetes, cardiovascular disease, or thyroid imbalance.
In recent years, researchers and advocacy groups have begun calling for a name change entirely because PCOS isn’t just about the ovaries. In fact, a 2023 NIH article suggested that the name itself leads to confusion and delayed treatment, especially for adolescents and those without classic symptoms.
And here’s where it gets even more complex:
Studies now show that people with PCOS are significantly more likely to experience:
anxiety disorders
depression
ADHD-like symptoms
and even traits that overlap with borderline personality disorder (BPD) and sensory dysregulation
One recent review in Frontiers in Psychology found that chronic inflammation and insulin resistance, hallmarks of PCOS, may contribute to the heightened emotional sensitivity, irritability, and sensory overwhelm many of us experience.
Which means when we feel like we’re unraveling emotionally?
It’s not “just us.”
It’s not that we’re weak, or dramatic, or failing at self-regulation.
It’s that our bodies are under strain. And they’ve been that way for a long time.
If you’re finding resonance here, you might want to stay awhile.
I write weekly about grief, mental health, and what it means to live inside a body (and mind) that doesn’t follow the rules. You can subscribe below, it’s free, and you’ll be in good company.
The Emotional Cost of Chasing Control
It’s hard to explain the kind of fear that settles in your body when your body becomes unpredictable.
The fear that if you don’t do everything right, things will spiral.
That if you don’t track, plan, restrict, tweak, hustle, something will break.
Or maybe something already did.
Living with PCOS means living with that fear.
And for me, like so many others, that fear turned into control.
Control became a coping mechanism.
A way to push down the grief and convince myself I was still in charge.
Of my body.
Of my future.
Of the story I never asked to be written into.
For years, I chased this control like it was a full-time job.
Meal plans. Supplements. Doctor visits. Fasting windows. Sleep hacks.
I tried every recommendation. Followed every protocol.
And when something didn’t work, I didn’t question the method; I questioned myself.
Because that’s what we’re taught, right?
If your body doesn’t respond, it must be your fault.
You didn’t try hard enough. You gave up too soon. You’re too emotional. Too undisciplined. Too much.
But I wasn’t doing it wrong.
I was just trying to survive inside a body I was never taught how to live in.
What they don’t tell you about chronic conditions, especially ones like PCOS, is that the emotional toll isn’t just a side effect.
It’s part of the condition.
And the grief…
God, the grief.
I had my first miscarriage at 21.
The pregnancy wasn’t planned. I was young, unsure, and wildly unready.
I told myself the universe knew what it was doing.
And maybe it did. But the loss still left a bruise.
Twenty years later, almost to the day, I had another.
Same man. Same diagnosis.
But this time, I wasn’t a scared kid.
I had my own life, my own work, my own sense of self.
The relationship was complicated, sure. But I was ready in a way I never had been before.
And when I lost that pregnancy…
I knew.
That was my last shot.
And I lost it.
Even now, notice the words: I lost it.
Like I did something wrong.
Like it was mine to protect, and I failed.
But I didn’t.
And neither do you.
This is the cruel math of PCOS.
Not everyone who has it wants children, but those of us who do are handed a body with a thousand complications and very little support.
We’re left to manage hormones and heartbreak in silence, while still being expected to smile politely when someone asks, “When are you going to start having babies?”
There is no clear path.
No perfect strategy.
No reward for discipline.
Healing, for me, has meant letting go of the myth that I could master my body.
It’s meant finding a really good hair removal tech.
It’s meant grieving fully, without justification.
It’s meant naming what hurts and refusing to carry the blame.
It’s slow and it’s messy.
A Ritual for Reconnection
Living with chronic illness often leaves us at war with our own bodies. This free guided ritual offers a simple way to soften that distance. Through a mirror, your breath, and your own words, you’ll begin a conversation with your body that asks for presence over perfection.
Before You Go
I wish I could hand you certainty.
A clear path. A treatment plan that works. A body that behaves.
But what I can offer is this:
You are not failing.
Even when you're exhausted.
Even when the labs are inconclusive.
Even when your skin flares, your weight climbs, and your brain fog makes you forget the damn sentence you were trying to say.
PCOS isn’t something you manage.
It’s something you survive.
Not because it makes you stronger.
But because it asks more of you than anyone ever prepared you for.
You don’t owe anyone peace with this.
Not your doctor or your family. Not the wellness industry trying to sell you balance in a bottle.
You don’t even owe peace to your own body, not right away.
But you can stop apologizing for it.
You don’t have to earn care by pretending you’re okay.
You don’t have to explain your grief to people who don’t understand what it costs to lose something you didn’t even plan for, or worse, something you did plan for.
You get to want more.
You get to be angry.
You get to take your hand off the control switch, just for a moment, and ask what would happen if you stopped trying so hard to fix it all.
Maybe what your body needs isn’t discipline.
Maybe it needs a witness.
Love today,
Heather 🌸
I am honored to be a witness. Comment below, or reply to this email, if you are living with PCOS and have a story to share.