Photo by Maksym Kaharlytskyi on Unsplash
Access note: This piece is published in my free category. Given its personal nature, I may eventually move it behind a paywall under Memoir in Essays. For now, I wanted to share this thread that has run through my life because I spent way too long thinking it was only me. After a year connecting with community here, I know I wasn't alone. Neither are you.
Content note: Within these paragraphs, you will find descriptions of childhood pain and medical gaslighting, underage substance use, psychiatric medication prescribed to a minor, parental and spousal infidelity, sexual abuse and coercive control within marriage, sudden loss of a sibling, and postpartum distress, in some detail. I share the specifics to make the pattern visible, not to perform suffering. I am on the other side of this now, but if any of this mirrors your own experience, please read gently.
Threads in process: This piece is a single thread, and I kept only the connecting segments I found essential to the pattern.
As I always say here, this is gestalt processing out loud. Some of you seem to appreciate that. And sometimes something I write sparks the recognition that lets someone else finally tell their own story. That’s the part that makes it worth publishing.
I write what is ready when it is ready, and threads connect in ways I don't always anticipate. There are layers here I haven't written yet: the body and my relationship to it; the lifelong patterns in how connection works for me; my perception itself, the temporality, the resonance and dissonance, the intuition that has navigated everything long before I had language for it; and the gap between what I was carrying internally and what showed on the outside.
They are being held under the surface as I write this, and they are relevant to the whole story. Some of them are only now becoming visible, obscured for years not only by what went unrecognized from outside, but by what the file and the medications did to my access to myself from within. I'll point to those pieces when they exist. For now, what follows is what was ready. What I'm writing now is partly excavation.
I‘m not ashamed of anything in here. Not the choices I made, given what I knew and what I was carrying at the time; I’d likely make them again. Not any of the diagnoses. Especially not being autistic. I’m writing the interweaving of it — the string of diagnoses, the trauma, the symptoms, the intelligence that kept finding ways to survive all three — because I can’t separate them from each other.
One final note before beginning: I’ve been sitting with this piece for two months. Gradually, the universe (or the field, if you like) kept offering me threads before I was ready. So many writers I follow have been sharing their own versions of this story, each a quiet signal that the time was approaching. Several of those threads are woven into what follows. They belong here.
It began with a conversation with Renee at Lately Found while we were recording our podcast episodes. Her first question asked what I wanted people to understand about my life before collapse. That turned into a long conversation, so long that it became the entire first episode. Questions two through five went differently: I answered, she responded, and I still need to record my responses to her responses before I can send the files to her; from there, it's a matter of her production time. With two nonlinear people, each of us with our own capacity challenges, it will be ready when it's ready.
The point I'm making here is that the gestalt was already inside me as felt meaning, but it was through her questions that more of it emerged in my answers. It began to move, and I started building language around it. This article is a more complete version of what I shared on Renee's podcast.
There were dozens of other threads in between — writers, conversations, comments, stories shared publicly and privately — building under the surface in ways I wasn’t fully tracking. Then Luci’s post made it move again.
She described being on psych meds and hormonal birth control from ages eleven to thirty-six. Nearly three years off psych meds and one month off birth control, she wrote, was the best she’d felt in her entire life. Her support network had been convinced she would die without the medications. She had been convinced they were eroding her. A week before writing, a doctor had offered her an anxiety and pain medication she didn’t need or request. She said no. They insisted. Just in case, they said. She threw it away.
I read that and thought: me too.
I have been Luci so many times in my life. It took until my mid-thirties to reach the milestone she described, off both, for the first time since my early teens. More than twenty years after the first prescription. I had reached that "best I'd ever felt" feeling, but to do so I had to ignore medical advice. Those meds absolutely did erode me, and they never touched the underlying issue of my pesky neurology.
Within the last year, I have received new recommendations for new drugs. I have even tried them because I finally have doctors that listen to me. Nonetheless, one of them cost me a $600 ER visit for low blood pressure. The other one made my anxiety worse. Both went in the trash, but only after I doled out the copays and sent my body on a couple of unnecessary roller coaster rides.
Beneath Luci’s words, Dr. Kim Granland of Exceptional Edge had written an apology. On behalf of the medical community, she said, “We were wrong.” She described what she now believed had happened to millions of people — told they were disordered, broken, in need of fixing, given years of psychotropic medication that sedated their nervous systems, then told that the rebound when they tried to stop was proof they couldn’t exist without it. What if, she asked, you had been living all along without validation of your neurodivergent brain and nervous system, desperately trying to survive in a broken system that was slowly destroying your spirit?
I restacked that thread and said I’d been working on a piece called “The File” for several weeks. That I hadn’t been ready to set it free. That I was getting closer.
The thread that finally made this come out was a conversation I had in comments and notes with Amberhawk. She had written an article that was seeded by something I had written. Her subtitle — “I got calm. I didn’t get better.” — landed deeply for me. She knew exactly what it meant. So do I.
This is what has been living inside me.
Nothing here is medical advice. My choices about medication were my own, made in consultation with my own body and, eventually, doctors I trust. Please make yours with qualified support.
The Body Speaks
Before the headaches started, there was this: I didn’t know where my body was in space.
I bumped into walls, furniture, and doorframes I had walked through a hundred times. I rolled my ankles on flat ground, tripped over my own feet, fell. Skinned knees were ordinary. Bruises were ordinary. Scars accumulated because my body was regularly and reliably surprised by the physical world around it. It was so normal for me to be scraped up that it stopped registering as remarkable, not only to me, but to everyone around me. I had a frequent-flyer card at the county hospital ER before I was ten.
Throughout middle school, I played volleyball and basketball and ran track, but I spent more time on the bench because of injuries than I did playing. I quit it all by freshman year, though not because of the injuries. I got caught drinking and was suspended from the volleyball team, which was the only sport that survived that long. But I’ll get to that later.
I also had the dropsies — still do — things slipping from my hands without warning, worse when I’m oversaturated or fragmented. My body loses its grip on the physical world in proportion to how much my nervous system is already holding.
I now understand that this is a combination of proprioception and spatial awareness, or at least that’s the official explanation for it. In certain neurological profiles, these senses don’t calibrate the way they do in others. The body genuinely doesn’t know. These are sensory processing differences that I believe were present from the beginning, evident in skinned knees and rolled ankles, yet it was never once recognized as important context. It was read as clumsiness or “not watching where I was going.” Though both might have been true, given how my perception and attention work.
And the pain — when the ankle rolled, when the knee hit the ground — never presented externally at the expected level. My nervous system perceived nearly all pain as searing, throbbing, and intolerable. On a scale of 1 to 10…It's an 11! Loud where other nervous systems were quiet, and that read as disproportionate, an exaggeration, or attention-seeking. No one, except my mother, ever considered that it might be true.
After a while, the repetition became inconvenient. Then it became old. The message I received, usually delivered in the patient tone adults use when they have run out of sympathy, was: Suck it up. It was medical culture and Gen-X culture saying the same thing in different rooms.
So, I learned to be calm when I was in pain. Eerily calm. I learned to absorb the impact without the response. I got very good at it.
But here’s the kicker. The pain didn’t stop being intolerable. It just stopped being witnessed.
Eventually I owned my clumsiness. Made it a joke before anyone else could make it a judgment. You know me, I trip over my own feet. A small preemptive surrender, naming myself as the punchline so the room could laugh with me instead of at me. It took some control back, in that the approach reduced embarrassment and shame. But it also cost me the truth of what it actually was: a nervous system that had never been correctly identified, registering the physical world with an accuracy and intensity that had no adequate support.
This has shaped how care shows up in my closest relationships. People who love me tend to hover when I’m handling something physical, especially if it requires hand coordination. The most common scene is in the kitchen, near knives. And I know why. I seem to need tending. In some ways, I understand that it’s true. But when your entire life has been organized around proving you don’t need help, because needing help was framed as complaining or exaggerating, being watched doesn’t feel like care. It feels like surveillance. My husband Jason does this. His intent is always good, and even though I know that, the reaction still comes sometimes. It’s difficult to explain. It’s always so difficult to explain.
I have never received a dyspraxia diagnosis. This dimension of my experience has never been addressed with a medical professional. Not because I hid it, but because nobody asked. Doctors back then didn't know. Parents didn't know. Nobody knew.
While I've wondered if dyspraxia might be part of the picture, I can't say for certain. I honestly don’t see the point in pursuing a formal diagnosis at this stage. My balance is better now than it once was. I still bump into things and drop things, but I get by just fine, I guess. Especially when in my own environment. What I know is that there were enough clues from the beginning. Whether anyone in that time and place could have seen it for what it was, I'm less certain. The framework barely existed. But the evidence did.
Around age twelve or thirteen, the headaches began.
By then, my body had already been speaking for years. My mother never stopped listening. She kept bringing me back to the county hospital ER, where we’d encounter the same small rotation of doctors. I knew them all by name. They might be lighthearted, make jokes, and try to relate to me on a human level, but they ultimately treated the symptoms in front of them and sent me home. Not one of them said, “This child keeps coming back.” Not one of them said, “Maybe someone else should see her.” Not one of them looked deeper than the surface.
The system was doing what it was built to do. The message I received about the purpose of their system was ‘patient quiet, not patient cured’. Get her calm enough to leave. Whether she comes back is next visit’s problem.
I have never read an account of someone with my presentation receiving adequate help in that era, especially in that small-town setting. The stories that get told are either more dramatic or luckier. Mine — the silently churning version, seen repeatedly and never seen clearly — is probably far more common than the record suggests. It just doesn’t always get written down.
My intelligence is old. I could always read what was happening, even when the adults were verbally silent. I understood, somewhere beneath the conscious level, that the adults weren’t ever going to solve this for me. Over time, I came to associate going to the doctor with temporary relief rather than resolution. The underlying meaning, as I carried it, was that the system’s goal was my quiet, not my health.
So, I eventually drew the only conclusion available: I am on my own. I will handle this myself.
That adaptation didn’t feel like a decision. It felt like earned reality. And I spent decades living it — managing my own care, pulling myself up by my bootstraps, surviving without help — not because I was strong enough to not need it, but because I had learned early that needing it didn’t get you anywhere.
The system trained me not to need it, and so did Gen-X culture. That combination became evidence I was fine, especially if I could speak coherently in a doctor’s visit or therapy session.
And the training didn’t stay in the clinic. It followed me home. It shaped how I received care from people who actually loved me, how I interpreted being tended to, and how I understood my own needs in private. When a system tells you authoritatively and repeatedly that your needs aren’t real, you eventually stop being able to tell the difference between not needing and not being allowed to need.
This right here is a direct override of my old intelligence. This is where I began shifting to the surface. To the intellectual. To the explanation, not the source. This is where I started ignoring my own signal.
The headaches were always blinding and bright, searing, tearing. My ears would be ringing, and I would be wailing, holding my head. I was a child. My mother was terrified, not knowing what to do. The only help available was the small-town ER.
What I now understand is that my nervous system had taken in more than it could process, an oversaturation. It was my nervous system reporting that its limit had been breached, telling me that the unprocessed load had nowhere to go. The headache was the emergency brake, my body finally speaking after my capacity had been exceeded. And, like other pain, it arrived with amplified force.
There were reasons beyond my neurology that kept my capacity overflowing. Real ones. My life had been turned upside down in ways that left visible marks on the community and invisible ones on me. The doctors never asked these kinds of questions because they never got curious. The file recorded my body’s response and left the cause entirely blank. I often wondered if there were privately held notes somewhere, something that said, “oh, her again”.
When my mother took me to the hospital for a headache, I have no doubt that she believed me completely. What the doctor believed, I cannot say. What I know is what I was given: a long-term prescription for Cafergot for the headaches, something for the stomach pain that came with the same storms, and on the worst nights, a Demerol and Phenergan injection that would soften everything into quiet. Then the car ride home in drug-induced peace. Then the sleep that followed.
The crisis stopped, but my capacity would continue to be tested. Quiet until the next time.
Nobody asked what was overloading me. Nobody asked what I was carrying that kept exceeding my capacity. I can’t say for certain whether I would have even been able to answer those questions. Old ways of knowing, my native language, had already left generations before me. So, they couldn’t see me. And they couldn’t help me.
When the world you live in offers no mirrors, no guidance, no validation of who you are, you don't learn to see yourself. You learn to see through other people's eyes. And other people's eyes had already decided.
The intellectual intervention was always at the level of the surface signal — quiet the pain, restore the baseline — but the internal baseline itself was already at my maximum. There was no margin in what they were restoring me to. And the oversaturation kept returning because what was underneath it remained unaddressed.
Each visit generated documentation. Each document added a line to a file. At that point, the file probably said: unexplained somatic complaints, migraine headaches with aura, anxiety, occasional vertigo, menstrual/hormonal issues. These diagnoses were technically accurate. But each one was read in isolation, and once something has a name, the questions stop.
The message underneath it all was that it was my job to contain it, and that how I experienced the world was not something I should ever attempt to explain. I understood this without having been told. Without having met anyone it had happened to. Old intelligence, reading the field, knowing the rules before I could have articulated them.
At some point — gradually, and then completely — it became a story about my exaggeration.
By my forties, the same nervous system that had been treated with Demerol as a child was being read differently. After my second C-section, in the family I hadn't built yet when this piece begins, my pain medication had run out, and I was still in incredible pain. I was also experiencing something postpartum — exhausted, oversaturated, fragmented. Not yet understanding I was autistic or what new motherhood would do to the delicate balance that I had previously reached. I had to go in person because the message I sent for a refill went against policy. Drive myself. Incision still throbbing. I sat in the stale waiting room trying not to erupt, but the tears came anyway, forced by the pressure of holding them back.
Then I entered the room with a doubting physician.
I honestly cannot reconstruct the room. I was too fragmented to hold it. What I carried away was a feeling, not a memory: They doubt me. They’re not going to help me. They think I’m a liar. A drug addict.
My baby was at home.
Are they going to take my baby away?
That fear — irrational by most measures, completely coherent by mine — is what the file produces when it follows you into the most vulnerable moment of your life. This wasn't "faking" anymore. Faking gets you doubted. This got you a feeling that you were being documented, and documentation has legal teeth.
I never saw what they wrote. What I had was the room: the doubt, the questions, the tone that assumes the answer before it's asked. The word for what I felt they were implying was drug-seeking. The word for what was actually happening was: my nervous system registers pain at a volume and duration that other people's don't, and it always has, and no one had ever connected that to anything except my character.
I was not in a relationship with my pain. I was drowning in input with no way to process it. But the file had already decided otherwise, and files have a way of becoming the truth they describe. The story the file was writing about me had already moved inward. It didn’t wait for an invitation or even knock on my door. It was just absorbed, the way children absorb the frameworks authority hands them, because children do not yet have other frameworks to use as counterpoints. Regardless of how intelligent I was, quite a lot of it got inside.
That absorption didn't start in the postpartum appointment. It started decades earlier, back when I was twelve or thirteen.
The story didn’t stay inside the clinic. In a small town, it didn’t need to.
My father was an alcoholic. He was unpredictable, hot and cold, capable of great tenderness and then, without warning, of putting his hands on us. I was a compliant child and was still hit more than a handful of times, usually for something small. My brother had it worse.
By around age eleven, I had already become uncomfortable having friends over, because my dad’s baseline when he was drunk was to be inappropriate with women. It was ordinary for our family to be out at a supper club for Friday fish fry, and my dad would make comments and advances toward other women. In front of my mom. In front of us.
My mother absorbed years of verbal and emotional abuse alongside that. Once, around the time of his most public affair — though I can’t say whether it was before or after — he sat the three of us down at the dining room table. He let out waves of torturous sobs as he gripped a gun in his hand, resting it unsteadily on the tabletop. He insisted we didn’t love him, that if we did, he’d know it, and if we couldn’t convince him otherwise, he’d shoot himself.
Then came the affair itself. My dad caught on film having sex with a coworker at work, made visible to everyone who knew us.
After that, the discussion of divorce began. I don’t have a clean timeline because holding memories during that kind of incoherence is impossible. What I can tell you is that he didn’t leave cleanly. He moved in and out of the house more than once, so the instability didn’t end with a single event. It went on and on, and I didn’t know from one week to the next which version of him would be home.
My mother, my brother, and I stayed in the small town where all of it happened. I changed after that, in ways that were misunderstood by people who had known me since I was small.
The community watched me change on the outside and drew its own conclusions. The rumors that formed were circulating before the behaviors they described. She’s a bad influence. Don’t let your kids near her. I lost deep connection to friends I had known for years, though they weren’t the ones making the choice. They were following the framework their parents had built from grief and gossip and the human need to explain what they thought they were witnessing.
I am a person of depth. I cannot access true friendship at the surface level. If this were a preference, I would simply choose differently. No. It’s a matter of architecture. What I lost wasn’t just friends. It was the register, the continuity. These were friendships built over years, beginning in kindergarten and accumulating slowly during the developmental years when you don’t yet know you’re forming something irreplaceable.
The level of connection possible for me suddenly became unavailable, replaced by something that looked like friendship from the outside but couldn’t reach me where I actually lived. That kind of depth, built that early, over that much time, doesn’t rebuild the same way. The window closes.
I also lost access to my father’s side of the family. The aunts, uncles, cousins who had been at every birthday, every holiday, who lived in the same town — the people who had been the continuous fabric of my extended life. Some of them did not remain neutral. They participated in the gossip rather than protecting me. So, I lost them too. The majority of my long-term ties were severed or severely damaged in a short window, at the age when belonging is most critical to development. Because of someone else’s action.
That loss didn’t get named at the time. I’m naming it now.
This wasn't the only time.
Building friendship, for me, works whole-to-part. It takes years, patience, closeness, trust, an open field where connection can grow across a longer arc than most people need or expect. Losing that arc isn't a minor social cost, and it kept happening.
It happened again in my early twenties, when I left a career and a life I'd built in Madison because we moved closer to my first husband's family. It happened again after my divorce from my first husband, when I lost not just him but his entire family, parents, three siblings, their spouses, ten nieces and nephews, and the new friends I'd made, most of whom I could no longer access because they were still connected to him. It happened again last summer, when I lost one of my closest friends, ten years of professional references, my network, and altered access to the friends who remained. Four times, across four decades. The file never recorded any of it.
This pattern is its own piece — it's one of the underpinnings of my whole trajectory — but it belongs on the record here too.
Back to when I was twelve or thirteen, when the family rupture cost me the first round of those friendships. This was the era in which I gradually began to doubt my internal signals, though not consciously. The weight I had been carrying — the load that kept producing the headaches, the stomach pain, the emotional storms — started to become invisible to me too. It did not disappear, but I had been taught by others’ reactions that it couldn’t possibly be there. They had told me so, in the language of documentation, in the clinical shorthand of untreatable, in the accumulated message of every intervention aimed at the symptom and away from the source: This is not as heavy as you think it is. You are someone who exaggerates. The weight is not the weight. You are the problem.
The load continued to accumulate. I just stopped saying it out loud. And eventually, I lost my ability to see it directly.
This is the deepest harm the file does, and the hardest to name. It doesn’t just mislabel. It migrates. It moves from an external record into internal belief structure, from the file’s description of me into my self-perception. The gaslighting doesn’t require medical professionals to keep showing up. I carry it forward for them. I become the instrument of my own misreading.
And so the warning system — the one my body had been running the whole time, accurately, loudly, at great cost — gets trained (or drugged) out of me. By the slow installation of someone else’s story about who I am and what I can be trusted to understand about myself.
Four Chemical Interventions
By my early teens, the early evangelical years of Prozac, when the drug was new enough to be prescribed with the confidence of conversion, I had my first antidepressant. There was no black box warning yet. That would come much later, when the research finally caught up to what had been done to children in the meantime.
Around that same time, I was also put on birth control pills before I had a reason to prevent pregnancy. The stated purpose was hormonal regulation. It would quiet the emotional storms, they said. All will be well if we manage the cycle that seemed to move through me more violently than it moved through other girls. It helped, partially. It would also become a complication in its own right later. But at the time, there were two prescriptions being written for a young girl by the same small town general practitioner: one for her brain, one for her hormones. Both aimed at turning down the volume on signals nobody was trying to read as a constellation.
There was no psychiatrist or specialist immediately available. The nearest mental health provider was fifty minutes away in the capital city — a real distance for a single-parent family doing its best in a small town. The GP became the mental health provider by default, armed with a prescription pad and the latest tools, filling a role he wasn’t trained for because no one else was there to fill it. Eventually, within a year or so, we did make that drive, and I did see a therapist. That time period is a blur, and I can’t reconstruct the sequence clearly.
What I know is that even if the right professional had been present, the framework for understanding what was actually happening didn't exist in clinical form yet. It still doesn’t. But the knowledge did exist. Old intelligence had been reading the situation accurately the whole time. The problem wasn't that there was no way to understand what was happening. It was that the system had already decided this kind of knowing didn’t count. So no one trained to help ever learned to see it.
What the file did not record: by the next year, I started drinking and smoking weed. I was a freshman in high school. I had recently left the high school band, where I'd been third chair trumpet behind two seniors. The concerts in high school were bigger, louder, and brighter than those in middle school. Sensory torture. Being in third chair also meant solos, and I had already lost my stable ground in the community that would have helped me feel comfortable doing them. Not long after, I was suspended from the volleyball team for drinking.
Slowly but surely, my life began to revolve around numbing myself. Going to school. Doing well enough to still get As on my report card. And turning down the volume until the next time.
Until recently, I understood my decisions during this period as necessary to find a new group to belong to. A group that didn't care what my dad had done or what my childhood friends' parents were saying about me at church luncheons. The friendships I had been building from preschool onward, including the peers who knew me best, weren't gone exactly, but I could no longer access them the same way. My new group included upperclassmen and some who had already graduated, and maybe not graduated at all. In this group, skipping school, drinking, and smoking weed was just what you did.
But I also liked how the drugs numbed me, slowed things down, softened the edges of a nervous system that had been running too hot for as long as I could remember. It was both self-medication, and it was also just being fourteen in the late eighties. The "both" matters, because it means the nervous system was finding relief through every available channel simultaneously.
The complete cocktail included two substances prescribed by a GP and two more that were found on their own. All it took was to be included in a new group of friends, most of whom I never had depth with. I originally said yes to the booze and the bongs because I thought it made me cool, but it ultimately made me keep coming back because I needed the edges dulled to endure the surface relationships and to forget what I had been through.
That numbing opened the door to more harm. Being in situations with older boys, even men, while I was blunted enough not to fully feel what was happening. That is not for this story.
Four chemical interventions. The doctor sanctioned two and called them treatment. The third and fourth were clearly problems by multiple measures. But they were all doing the same thing.
What I understand now: A teenage girl’s nervous system was producing signals that were loud, accurate, and completely misread. The headaches and stomach pain were the body speaking. The emotional storms weren’t really emotional at all. They were the nervous system’s response to cumulative input nobody had ever helped me understand. I had tools. I had just been taught they were unreliable. And I had no one to tell me why certain places and situations cost what they did. The Prozac, the birth control, the alcohol, the weed, all of them were managing downstream effects of something that had no name yet and would not have one for decades. Not one clinician during that period connected the signals to each other or asked what lay beneath them all.
What could have been different: I used to think an earlier diagnosis would have changed everything. I’m less sure now. In the late eighties, in a small town, the word autism applied to a girl by clinicians who barely understood it in boys would have been its own kind of file — the system’s definition, handed down before I had any agency in shaping it. What I have instead is a story I built myself, backward through my own life, in my own language. The later-in-life diagnosis confirmed what I had already begun to understand. It gave me a doorway to self-understanding on my own terms.
What could have been different? Maybe just this: a clinician getting curious. Someone who asked: What load is this child carrying, and why is nobody helping her put it down?
What the Twenties Looked Like
The drinking continued through my twenties, but I had dropped the weed. By then, I was working somewhere that celebrated my natural ways of being. I was respected, relied upon, and professionally confident in a way I hadn’t been before, though I wasn’t entirely sure I deserved it.
That environment provided a framework in which not only my cognitive intelligence, but my perception and old intelligence were assets, and in which I was received as fully human, liked, and trusted. I was good at the work. People reflected that back to me. That counterweight held something in me upright that might otherwise have collapsed.
I spent most of my nonwork time drunk. This wasn’t unusual behavior in Wisconsin. It was ordinarily normal. Sundays were for couch comas.
I kept returning to doctors for severe PMS, eventually PMDD. Hormonal storms moved through me more intensely than I understood was typical. Doctors would shrug and tell me to take ibuprofen and use a heating pad for the cramps. The birth control was the best they could do, they said. For quite a few years, I believed it was entirely hormonal because my body was loudest during those fluctuations. So, in that sense, the read was accurate, but it was never the full picture.
What I understand now: Neurodivergent women experience PMDD at significantly higher rates than the general population. For me, it registered as another sensory and pain difference, but one that multiplied the load. I had also been on birth control continuously from my early teens until around age thirty — roughly seventeen years of my hormonal baseline being chemically mediated. My body had never been allowed to find its own equilibrium. When I came off the pill to try to conceive with my first husband, I was encountering my own unmediated hormonal reality for the first time in many years.
My nervous system had been operating at or near its maximum tolerance for a very long time. There was no margin. The discomfort itself, and the constant cognitive effort to manage awareness of it, consumed borrowed capacity. Other tasks became harder. Frustration rose faster. Anything that tipped over that limit was dysregulating, and PMDD tipped it reliably, every month. What looked from the outside like nothing at all was, underneath, normal hormonal fluctuation landing on a nervous system that had no room for it. My body was telling the same story it had always told, just in a different register.
To doctors, to colleagues, to nearly everyone, that register was invisible. I was calm on the surface, the way I’d been trained to be since childhood. My first husband was the exception. He saw the moodiness. He just had no interest in understanding it, in a marriage that wasn’t safe enough for that kind of understanding to exist anyway. So even the one place the register was visible, nobody was reading it. Nobody connected it to anything.
There’s a trap in that. Tell a doctor, calmly, that there’s rage beneath the surface, and the calm itself becomes evidence against you. Either it unsettles people, or they simply don’t believe it’s true. You’re expected to perform the thing while you’re describing it, to be visibly in it while somehow also being coherent enough to be taken seriously. But if I had let what I actually felt on the inside show on the outside — if I’d looked as extreme as it felt — I wouldn’t have been read as a woman managing PMDD. I would have been read as unstable, unreliable, someone whose career and relationships couldn’t be trusted to her.
There was no register that accurately saw me. Calm made me disbelieved. Visibility would have made me dangerous, professionally and personally. So the choice was never between “fine” and “not fine.” It was between two costs, and I paid the one that let me keep my life.
The file, by then, said everything that was there previously, plus PMS, menorrhagia, and depression. The conditions kept accumulating. No resolution came with any of them.
The Body Gives Out
There have been three significant collapses in my life. The first was the rupture in my family when I was twelve or thirteen. I did not recognize it as a collapse at the time, but I now see it as the event that set the conditions for everything that followed. The third is the one I write about most on this Substack because it is recent, the most severe, still being processed, and it provides the most accessible evidence of what a traumatized, autistic nervous system looks like when it never learns to naturally navigate this world and finally exceeds its limits.
This is the middle one. The one that I’ve only written down in fragments. Until now.
My brother died suddenly when I was thirty-one. Six months later, I ran a half marathon in his honor. That still amazes me. I had taken up long-distance running as a way to process his death, and I loved it in a way that surprised me, especially given all I’ve written earlier about my body’s relationship to its environment. My body had found another channel. It was one I deeply needed because the relationship I was living in, with my first husband, was not a safe harbor for me.
The following year, training for the next race, my body started to give out.
I had been mostly alcohol-free for about a year by then. I had also come off birth control for the first time in roughly seventeen years because we had been trying to conceive. I had recently completed a round of Clomid. Coming off the pill after that long, adding Clomid on top of it, for a nervous system already at maximum tolerance with no margin — each of these was one more thing consuming borrowed capacity. Then I learned about my husband's affair with the hairdresser at Cost Cutters. Or was it Great Clips? Doesn't matter; it was one of those. Don't quote me.
In addition to the surprise sidepiece, my first marriage included sexual abuse, emotional abandonment, gaslighting, and coercive control. This is context I’m naming without detailing, because this piece isn’t for him. What I’ll say is that my first husband was having an ongoing sexual relationship while we were trying to conceive a child. And that rupture landed on top of already present grief.
My body, which had been carrying that marriage and that grief and three decades of accumulated unrecognized load, finally said NOPE.
It started with lower back pain. Then what was diagnosed as sciatica. Then hip and leg pain. Then full-body pain. Then unpredictably high blood pressure episodes. Then panic attacks. I was still having migraines. That part hadn’t changed. The new symptoms arrived in sequence, and the medical response tracked them one by one, adding symptom management for each new presentation without ever asking what was causing them all.
I was thirty-two when the cascade began. I saw specialists upon specialists. Each for a different piece of the picture. I walked away with several new diagnoses and chart notes: PTSD (later classified as “complex”), Generalized Anxiety Disorder, Fibromyalgia, Chronic Fatigue Syndrome, Endometriosis, and prone to chronic stress.
By the time I went on short-term disability leave from my job, I had been prescribed, at various points during that period and in various combinations: Cymbalta, Zoloft, gabapentin, tramadol, trazodone, oxycodone, Flexeril, ibuprofen, and acetaminophen. There may be more that I’m not thinking of, but this is the best I can do from memory. Needless to say, I became incredibly ill. The medications targeted the symptoms in isolation. None of them were aimed at the source or connected the dots to learn what they had in common.
The leave was supposed to be six weeks. The reason I gave was physical pain. I had been using a balance ball as a chair because I could no longer sit at my desk. That was what was visible to my coworkers and the team I was managing, and it was the only part that could be translated into institutional language. The rest — the marriage, the grief, the body that had been carrying everything since childhood — didn't fit on the form. I got calm. I didn't get better. And I find it telling that even then, my work didn't suffer. I left everything there intact. This is what the training produces. A surface that holds even when everything underneath it is breaking.
I was defeated. My body had given out, and I was ashamed to have needed the leave in the first place. I judged myself for the collapse, telling myself I was weak, that I must not have tried hard enough, even after everything I had been through. At least, that’s how the six weeks began. But all that solitude left room to process. And I processed my way right out of that marriage. We filed for divorce before the six weeks were up. I never went back to that job.
What I understand now: This is what happens when a nervous system, built up over thirty years of unrecognized stress, faces sudden, overwhelming relational rupture without the right support or understanding. The fibromyalgia and chronic fatigue were not new conditions. They were the end of the rope. The medical response — more medications, specialists, and symptom management — was exactly what I’d come to expect. The siloed medical system seems to always focus on the surface, every piece in isolation, completely missing the bigger picture.
Recovery meant leaving the marriage, leaving the job, and moving back to where I felt most at home, even though no stable home existed there. It also meant detoxing from the medications slowly, by necessity, through trial and error, without clinical guidance. I found my way to alternative, holistic, naturopathic medicine. I experimented with variations of a whole-diet approach, movement, and supplementation. I drank lots and lots of water while letting my body and brain rest. I tried nearly everything I had access to. I became my own clinician because I had lost every shred of faith in the medical system.
There were also several months of living completely alone. For a nervous system that had been living in an abusive marriage for seven years, the absence of relational demand was a necessary form of medicine. The backlogged processing finally had room to move.
By thirty-four, I had reached a stable baseline. It was from this healthy baseline that I connected with my current husband, Jason.
From here, I became highly skeptical of medical advice, especially when it came with a prescription attached. I outright refused most of them, and eventually I found a doctor who honored my preference of being medication-free. My body does not respond as expected to medications; never has. Probably never will.
The system played no role in helping me reach a healthy baseline, other than showing me what not to do. It was my determination and resourcefulness that helped me survive without support, but doing all of that without support is not a badge I wear. The “look at how tough I am” badge. No. I’m saying this as my lived truth, but also as an indictment of the system that offered zero help.
I shouldn’t have had to do this alone. The stability I built at thirty-four might have been available earlier, with a fraction of the cost to my body, my relationships, and my life.
What held me through the years that followed wasn’t treatment. It was the slow, consequence-driven construction of a life my nervous system could inhabit. The research I did on fibromyalgia during that time was the catalyst for this learning. I was coming to terms with my body’s limits, as understood through that particular lens.
Through my lived experience up until that point, I finally understood what I needed from my professional work. I had a clearer picture of what a healthy relationship was supposed to look like. I married a deeply caring man, my best friend. We had two beautiful children together.
The stability I maintained during that period was the result of gradual, hard-won management of my environment and relationships. I had become completely comfortable canceling plans. I learned what I needed largely by experiencing what happened when I didn’t have it.
What has remained true throughout my life is that circumstances had to become unbearable before I could figure out what needed to change. Consensus reality had overridden my trust in my own intuition, which I’ve come to understand was still driving things beneath the surface. But I couldn’t access it directly. It arrived translated, filtered through analysis and pattern recognition, as thought rather than as felt knowing.
I adjusted my approach to life in several ways before I understood what I was doing or why. The adjustments were right, strangely enough. I just couldn’t see the source of them clearly enough to trust it or use it deliberately.
And then I was lulled. I had been doing well, relative to the rest of my life, and I confused relative stability with having it figured out. The circumstances that would eventually break me last year weren’t visible because they hadn’t broken me before. The map was accurate for every terrain I’d already crossed. It had no record of what was coming. I had never learned to use my compass.
I write at length about the collapse that brought me to Substack across my previous 100+ essays. I’m not going to get into it here, other than to say it was a continuation of the pattern I’ve been describing. The depths to which I fell are what made any of this self-awareness and writing possible at all. For that, at least, I am grateful.
What the File Never Said
The file followed me.
Here’s what it didn’t say:
Child who knows the world differently than what we are taught to expect, living without mirrors, living without guidance.
Child who couldn't locate her own body in space, who spent more time on the bench than on the court, whose pain registered at a volume nobody believed.
Child in a family rupture, carrying public shame in a small town, with collapsed relational scaffolding, nervous system overwhelmed, signals accurate and unread.
Adolescent self-medicating with the tools available because the prescribed tools weren't reaching the source.
Woman in an abusive marriage, processing grief, load compounding, system at the edge of collapse.
All of this connected, all of it pointing to the same underlying architecture, all of it askable if someone had thought to ask.
As a pre-teen, it said: Unexplained somatic complaints, occasional vertigo, migraine headaches with aura, anxiety, menstrual/hormonal issues.
In my twenties, it said: Unexplained somatic complaints, occasional vertigo, migraine headaches with aura, anxiety, depression, severe PMS, and menorrhagia.
In my thirties, it said: Migraine headaches with aura, bouts of Benign Positional Vertigo, Generalized Anxiety Disorder, Depressive Disorder, Unspecified, severe PMS, menorrhagia, PTSD (later classified as “complex”), Fibromyalgia, Chronic Fatigue Syndrome, Endometriosis, and prone to chronic stress.
By my forties, PMDD and adenomyosis were added. I had a hysterectomy at age forty-eight.
At age fifty-one, I received my autism diagnosis.
The hysterectomy at forty-eight resolved several of the diagnoses on that list. As far as my doctor can tell, I’m still cycling with my one remaining ovary.
The fibromyalgia remains on the file, but I’ve never received treatment for it other than the fistfuls of pills I was prescribed initially. I’m not convinced that’s what it is anymore. I now understand the pain differently, as something that worsens significantly under load. I’m still deciding whether to open that conversation with my doctor or to pursue a neurologist. It was the pain I described going quiet, briefly and remarkably, in When Care Has Edges.
The migraines are largely gone. They return only when I become oversaturated or fragmented, when I hit a wall, which I’ve written about recently in “Every Summer I Become Less Solid.”
The anxiety and depression on that list are not separate conditions. They are outward presentations of autism and trauma. They were never anything else, and medications never helped me with those symptoms.
I remain aware of the cognitive cliff that neurodivergent women report in menopause. I am already thinking about what I will ask for when that time comes.
This is what it looks like to be your own clinician after many years of having no choice but to be.
So, as Amberhawk so aptly put it:
I got calm. I didn’t get better.
Doctors kept offering treatments that produced the first thing while never addressing the second. And somewhere along the way, I lost the ability to tell the difference. The file had taught me that calm was what better looked like, and that if I wasn’t better after receiving the care offered, I was the problem.
The file didn’t just precede me into every clinical encounter. It preceded me into my own understanding of myself.
What it never recorded — what it was structurally incapable of recording — was what I was enduring. The load was real. The adaptation was real. The decades of carrying what nobody named, the self-construction without a map, the consequence-driven learning, the repeated breaking and rebuilding: all of it required resilience that was genuine, sustained, and invisible precisely because it was effective.
By then, the performance had become indistinguishable from personality. I wasn’t consciously masking. I had simply become someone who held it together, without realizing I was doing it. What the outside world saw was calm, punctuated occasionally by reactions that seemed outsized to the immediate trigger. What was actually happening was that the accumulated load finally found an exit. The trigger was just the last straw. The weight behind it had always been building under the surface.
You are only seen as resilient if someone can see what you are carrying. The file made sure the weight remained invisible. So, the resilience disappeared with it.
That is what I am still undoing.
The Language
There is something else the file didn’t record until recently, and it’s something I write a lot about here.
When I am fragmented — in pain, overwhelmed by sensation, backlogged processing, exceeding my capacity, under pressure — my words disappear. The language available to me in a regulated state becomes inaccessible. What comes out is incomplete, nonlinear, difficult to follow, and sometimes intense or emotional. In clinical settings, this is the moment that matters most: when I need to communicate accurately, the tools for doing so are least available.
Since my autism diagnosis, I have learned to script in advance, anticipate what a clinical encounter would require, and send notes to my doctor in writing before my appointment. I rehearse, organize, and produce linear speech under conditions that would otherwise make that impossible. This took years of trial and error and interactions that went wrong because I hadn’t prepared. I learned the hard way what my nervous system does under pressure and how to work around it.
This is the same trap in a different room. The more analytical and linear my speech and writing were, the more I was understood, trusted, even relied upon — not only in medical settings but in most others. I learned a long time ago that my analytical voice produced credibility, so I used it. It was the register that let me be heard without being read as unstable. Over time, it became my default, indistinguishable from my earlier ones.
I learned language in chunks — professional prose alongside informal speech, analytical framing alongside intuitive knowing — and the voices mixed. My current understanding is that gestalt language processors absorb language whole, which suggests that my combined register isn’t confusion or contamination; it’s simply what absorbing every register I’ve ever encountered, all at once, produces. I can no longer always tell which register is native and which was learned under pressure, and I’m not sure that distinction matters as long as I understand why my vocabulary and style are mixed.
I think analysis is in service of my natural mode, not separate from it. The whole arrives first — felt, whole, already known — and analysis is what comes after, hunting for the why underneath the why underneath the why, until the internal knowing has external, verifiable evidence to stand on. It’s validation, not discovery. I already know the thing. Analysis is how I prove it, to myself as much as to anyone else.
What sharpened under pressure was awareness of the stakes of leaving the analysis unfinished. If I don’t find the why, the processing doesn’t stop on its own. It runs involuntarily in the background until the loop closes. Unresolved loops are expensive in this mind, and for a long time, closing them quickly wasn’t optional. It was what kept me believed, what kept me safe.
I raise this point for two reasons.
The first is medical self-advocacy. Knowing my nervous system well enough to script in advance is a skill that took me years to develop. It also requires a level of self-knowledge most people don’t need to cultivate and is simply unavailable to anyone whose system is too overwhelmed to use it. The people who get heard in medical settings are disproportionately those who can maintain coherence under acute stress.
The second is for those who didn’t develop analytical language, or whose analysis didn’t take the form that institutions recognize as credible. This is not a judgment. It is a data point in the question of who gets believed. If analysis was survival for me, then those who didn’t develop it weren’t less intelligent or less right about their own experience. They were less trained, less protected, or operating in environments that didn’t reward the particular form of legibility that buys institutional trust.
What they needed wasn’t more analysis. The system already offers that and calls it “treatment”. What was needed was validation of other modes of knowing — the somatic, the intuitive, the relational — as legitimate sources of information about one’s own experience. The file they received was built, in part, on the system’s refusal to recognize those modes as real.
I am still early in this realization. I hold it carefully.
And then the question beneath all of it.
When I recognize pieces of myself in someone else’s story — the orientation loss, the freefall, the long stretch without anyone who believed them — my heart aches and asks: What if my mother hadn’t believed me? One small change, and my entire trajectory could have been different. I ask that question and cry every time. My mind won’t answer it, but my body already knows. Unlike the movie Sliding Doors, I don’t think the universe guarantees a livable outcome whether or not you make it on the train.
I want to be precise about what I mean by losing grip. I am not talking about psychosis. What I mean is a break in reality caused by orientation loss, the temporary collapse of the sense of where you are in relation to yourself, others, and what is happening. I have come to understand it as a nervous system response to exceeding capacity. I would assume it could happen to anyone carrying too heavy a load without enough support. It is not a character flaw or a psychiatric event. It is what happens when any system exceeds its capacity. Physics, not pathology. There is also a temporal dimension to this that I’m still working to understand. That thread will follow when it’s ready.
I’ve wondered whether orientation loss, in its more acute forms, has sometimes been read as psychosis. That question requires a longer discussion. It belongs in Part Two.
I still experience it. Not only when coherence collapses under load, but when new layers of reality become visible, when inner and outer coherence fall briefly out of sync, in the liminal spaces between one understanding and another. I recognize the territory now. I’m still learning to trust it.
What determines how long I stay there varies. It’s why I’m there, whether the environment is safe, whether the people around me believe me, whether the load lifts, whether there is something stable to orient toward, and probably more that I can’t hold yet. Since finding community on Substack, it has also become about mirrors — people wired similarly, telling their stories, reflecting something back that I recognize. I spent most of my life without those. I know what their absence costs. The more I learn, the more stable the center becomes. Let me be the mirror I didn’t have for you.
I had my mother’s belief. I stumbled into a professional environment that reflected my competence back at me before I had the language for it. I settled into a healthy relationship and built a family. Eventually, I found the community I’ve built here. These weren’t luxuries. They were the structural elements that kept orientation recoverable when everything else collapsed. Connection, validation, and reminders when I was self-gaslighting. All of those things mattered. They may have been my sliding doors.
I know what the most acute version of this looks like from the inside. The third collapse temporarily took my ability to speak words with it. I wrote about that experience, and what has changed since my diagnosis, in What Happens After You Say "I'm Autistic."
What I’m sitting with is whether the women who received more stigmatized diagnoses, who stayed in freefall the longest, who are still there, had those tethers to reality. Or whether the file reached into their closest relationships and convinced the people who might have held them that they were the problem. I suspect that in some cases the medical system removed the floor and then diagnosed the fall.
I know what that slip feels like. I don’t write from safety. I write from hard-won, repeatedly tested stability, which is a different thing, and a more honest one.
While I was sitting with all of this, still not ready to publish, Amberhawk responded to something I had written about rage held under the surface. She wrote:
“The important word is held. And not as restraint, but as pressure. You were describing a felt sense of a violent pressure. And even though it was within, the violence wasn’t something you enacted, it was violence being done to you. That is the weight — the accumulation. And it seems like every intervention you were given was intended to strengthen the restraint.”
I read that and felt something settle.
Every intervention aimed at strengthening the restraint — the mindfulness, the emotional regulation techniques, the implicit and explicit message that controlling your response was the goal — was adding pressure to a container already at capacity. And underneath all of it was a moral judgment: that feeling the pressure itself was the problem. That if you were carrying load, pain, rage that accumulated in ways nobody could see and nobody validated, the correct response was to get better at holding it.
Quietly. Calmly. Without disrupting the room.
That’s not treatment. That’s training. And it’s an endless cycle, because the load doesn’t stop accumulating just because you’ve gotten better at hiding it.
I see it going backward and forward. Backward into my own family — the sudden, confusing meltdowns that were inevitable because the pressure was invisible, because nobody had the language, because we were never taught to name the load, to ask for relief, or to honor those requests when others made them. The physics always won eventually.
And forward, which is where the hope lives. I’m trying to be the generation that has the language and passes it on. That tells my kids: you don’t have to do everything, even when — and maybe especially when — you want to. You can take time to reset. When you feel this thing building inside, that’s information, not failure. That’s your system telling you it needs something. Honor it.
The cycle breaks when someone finally names the load out loud and teaches the next person they don’t have to carry it alone.
That is what this piece is for.
If this is your story, or part of it, this is my invitation. Part Two — The File: What the Record Shows — will build the case outward: the research, the statistics, the institutional pattern, and other people’s stories. The terms of this ask are yours to decide. Named or anonymous. A previously published piece I could link or reference. A private conversation we decide together how to present. I know this isn’t only my story. I’ve read enough of yours to know that. If you’d like to add your voice to mine, reach out to me privately.
So much resonates here. I am sitting particularly with this: “What was needed was validation of other modes of knowing — the somatic, the intuitive, the relational — as legitimate sources of information about one’s own experience. The file they received was built, in part, on the system’s refusal to recognize those modes as real.”
Mirror Friend. 🧡