Believe Me Before I Go Blind

For years I told people something was wrong with my head and my neck. Not metaphorically. Not as a feeling-state to be processed in a softly lit room. I said: there is something wrong, in here, structurally, and it is getting worse. And for years the people around me, clinicians and friends and family, people who would tell you without hesitation that they love me, performed a small, practiced act of translation. They heard my head and my neck and they returned to me your emotions, your hormones, your weight, the unfortunate lens through which you, a sensitive woman, insist on viewing your own life. The complaint went in as a fact about my body and came back out as a fact about my character.

In March it got significantly worse. Stroke symptoms. The inability to recall words. Vertigo. And, of course, excruciating pain. But I have lived with pain a long time, and I have been trained to discount it, so I could still manage it. I could report on it and look calm while I did. I would say, there is something terribly wrong with my brain, I cannot look after myself, I cannot drink water, I cannot eat, and what I would hear back was: this must be why tubercular patients were once considered elegant; you look so good. Or: aren't you on that special diet for your skin? Your skin has been amazing lately. No. I was unable to sit up or stand. I was losing a dangerous amount of weight from dehydration and from not being able to eat. And as I reported this, plainly, repeatedly, in the calm voice I had been trained into, the people I was reporting it to began, one by one, to stop answering my calls.

This is a failure of what philosophers call epistemic trust, and the term is plainer than it sounds. Epistemic just means having to do with knowledge: how we know things, who we believe, what we accept as true. Epistemic trust is the basic willingness to treat another person as a reliable source of information about their own life. We have an old story for what happens when it fails. Cassandra is given true sight and cursed so that no one will believe a word of it; she watches the disaster coming and is called mad for naming it. Tiresias is struck blind and handed true prophecy in the same stroke, and spends his life ignored by the kings who summon him. Myth keeps these two curses separate: the seer who is believed but blind, the seer who is sighted but disbelieved. I seem to have drawn both at once. I have been telling the truth about my own body in plain language and watching it disregarded, and the truth I was telling is that I am going blind. The difference between me and Cassandra is the part that keeps me up: no god cursed the people around me into not hearing me. They could have. They simply didn't.

Epistemic trust is the thing that lets me say "the stove is hot" and have you not put your hand on it to check. When you take someone at their word, you are extending them epistemic trust. When you decide, before they've finished the sentence, that their report of their own experience is unreliable and needs to be corrected by you, you have withdrawn it. That withdrawal is what this whole essay is about, because I have been living inside it for years, and it could have cost me my eyesight.

I have idiopathic intracranial hypertension. The pressure of the fluid around my brain is too high. This is measured, not intuited. You put a needle in the spine and you read the number off the column, and the number was high. The mechanism is mechanical: I have a very large skull and a very small neck, my imaging shows narrowed vessels, and fluid that needs to drain out of a large head is being forced through vessels too narrow to carry it. The treatments are mechanical too. Spinal taps. A serious medication I am titrating up. And the likely endpoint is a stent placed in a vein inside my skull, which is to say, brain surgery. None of this is speculative. The diagnosis is made, the taps are done, the medication is real and underway, and the surgical road is the one I'm on, even if I haven't reached the end of it yet.

And here is the thing I want to write about, because it is the thing that has genuinely undone me, more than the needles: even now, with all of this happening, the epistemic failure does not stop. I say I found the problem, I have a solution, I feel so much better, and someone asks whether I've considered that it might be perimenopause. I describe a measured pressure, a narrowed vessel, a surgery on the table, and someone wonders aloud about my hormones. I want to be precise about what this reveals, because people will tell you the doubt was reasonable before the diagnosis. We just didn't know yet. But doubt that survives the diagnosis was never about the evidence. If new and overwhelming evidence doesn't move the belief, the belief was never tracking evidence. It was tracking me. It was a prior about what kind of person makes this kind of claim, and that prior is apparently load-bearing enough to survive a needle in the spine.

And I want to be precise about this too, because the prior protects itself with a piece of circular logic. If the inner work had relieved my symptoms, that would have proven the problem was psychological all along. And when the inner work did not relieve them, that proved only, to the kind of person already committed to my being the problem, that I hadn't done it properly. Heads, it was in my mind; tails, I failed at the cure. The one conclusion never permitted was the true one: that the work didn't help because the problem was never psychological to begin with.

So let me close that escape hatch. I did the inner work. Not casually, not as a wellness gesture, but at the level of a professional. I held an associateship in mindfulness-based psychotherapy for two and a half years, trained in the most current and best-understood techniques for neural retraining, the exact protocols you would prescribe if you believed my brain simply needed to be taught to stop misfiring. I hold five separate EMDR certifications. I did not dabble at the edges of nervous-system regulation; I am credentialed to teach it. And I did, over time, lose fifty-five pounds, though I want to be careful here, because I am not offering that as evidence that I complied with the one order the literature agrees on. I don't think that order is sound, and I'll get to why. I lost the weight because I had learned what every woman learns: that a larger woman saying something is wrong with me is not heard at all, and that being smaller buys you, if not belief, at least a hearing. That isn't treatment. That's the toll you pay at the door.

None of it touched the problem. And that is not the failure people will reach to read it as. It is the proof. A mechanical obstruction does not resolve because you have processed your trauma beautifully or shrunk your body to spec; fluid does not learn to drain through a vessel too narrow to carry it because you meditated correctly, and it does not learn to drain because you got smaller, either. The interventions didn't fail because I did them wrong. They failed because they were aimed at a problem I did not have, while the problem I did have went unaddressed and therefore kept worsening, quietly, mechanically, on schedule, until I began having symptoms that resembled a stroke. That is what it costs to spend years treating a structural emergency as a personality flaw. The body keeps the appointment even when no one else will believe it was scheduled.

I want to be clear about what was at stake while this translation was happening. The Mayo Clinic puts it plainly. "Up to 40% of patients with this condition can have permanent vision loss," says Dr. John J. Chen, a neuro-ophthalmologist there. Up to forty percent. Permanent. That is the downside risk of the thing I was naming, and it is the thing people were waving off when they told me to go on more walks, to get some air, that I seemed fine. I had roughly six times the normal pressure inside my skull and I was being prescribed fresh air. And here is the perverse engine of it: the more I insisted, the more the insistence itself was read as the symptom. My complaints were not received as evidence of suffering. They were received as further evidence that I was hysterical, that I was the kind of woman who makes too much of things, and look, here she is, making too much of things. The distress that should have raised the alarm was reclassified as the disease. There is no move available to you inside that logic. Calm means nothing is wrong; alarm means you're irrational. The body can be screaming at six times pressure and the screaming is taken as proof the body is fine and the woman is broken.

And lest anyone read this as a simple story about a fat woman being dismissed for her size, the bias I am describing is more flexible and more insulting than that. It rewrites itself to fit whoever is standing in front of it. A larger woman says something is wrong and is told to lose weight before anyone will look. I lost the weight, and arrived at the other side of the same wall: now I am told I can't be sick, because I look like someone's idea of what health is supposed to look like. I have spent years of my professional life working with clients who have eating disorders, and here is something that should disturb anyone who thinks appearance is a proxy for health: the anorexic patient often looks exactly like what we are trained to call healthy, while carrying some of the highest medical risk and mortality of any condition in the field. The body that reads as well can be the body closest to dying. We have it precisely backwards, and we have it backwards because we decided long ago that thin means safe and fat means sick, and then stopped checking.

And the eye itself has been trained off true. Not by runway models; everyone already knows runway models are starving, and that example lets people off the hook. I mean the actresses we hold up as ordinary beautiful women, the everyday standard a normal person is supposed to measure against. This has been studied directly, because actresses' heights and weights are documented for casting and media researchers have gone looking: while only about five percent of American women are clinically underweight, content analyses of television have found that roughly a third of the women on screen are. A third. The women playing the everyday mother, the lawyer, the love interest, the normal woman next door, a population three to six times more underweight than the actual population they are standing in for. That is the baseline we absorb. And it does what repeated exposure does: it resets the norm. Researchers have shown that women now reliably misjudge underweight bodies as falling in the normal range, and idealize those underweight bodies without realizing they are underweight at all. A seventeen reads as fine. The ruler itself has been bent, and it is bending further, which means the very surface I am being congratulated for is calibrated against a standard that is already sick.

I have had a man I was dating tell me, while I was trying to describe what was happening inside my head, honestly I'm just hearing wah-wah-wah, like the Charlie Brown teacher, I can't stop staring at you. That is not desire winning out over attention. That is attention being withheld and dressed up as a compliment. Whether the verdict is too fat to be credible or too pretty to be sick, the underlying move is identical: the woman's own report is the one piece of evidence that doesn't count.

Even good friends, people who have known me for years, who would describe themselves as devoted, quietly stepped back as I pushed harder. And they stepped back specifically because I pushed: because I would not concede that they knew my own brain better than I did. I held the line that the thing happening inside my skull was mine to report, and that line cost me people. Maybe that distancing is normal. Maybe it is even predictable, the ordinary friction of a person who has become inconvenient to believe. But normal is not the same as moral, and it is not the same as okay. A thing can be common and still be a failure. Everyone does it has never once made a wrong into a right.

This is what a failure of epistemic trust actually is. It is not disagreement about facts. It is the refusal to let another person be a source of facts about their own life, to treat their testimony as data rather than as symptom. And once you see it clearly you understand something bleak about relationship itself: there is no intimacy possible with someone who will not take you at your word. None. You can have warmth with them, history, obligation, even a kind of love. But you cannot be known by a person who has decided in advance that your account of yourself must be filtered, corrected, and traced back to your hormones before it can be admitted as real. To be loved while being structurally disbelieved is one of the lonelier experiences available to a person, and I have been living inside it.

I do not think it is a coincidence that the condition doing this to me is one that overwhelmingly affects women of reproductive age, and that it is underdiagnosed, undertreated, and poorly understood. The same bias that makes my friends reach for perimenopause is baked into the research itself. The literature loops IIH almost reflexively to weight, to fat women specifically, on the strength of studies that are thinner than people assume. The foundational weight-loss paper everyone leans on is a chart review of fifty-eight women, and even that study, the one the whole lose weight edifice rests on, found no difference in final visual acuity or final visual field between the women who lost weight and the women who didn't. Weight loss sped up the recovery; it did not change where the eyes ended up. The study's own data do not show weight loss saving anyone's vision, which is the outcome that actually matters.

The condition is openly described in the literature as a "diagnosis of exclusion," its core mechanism conceded to be "still largely unknown" and "imprecisely described." And yet lose weight arrives with the confidence of settled science, while the more mechanical and more interesting questions go under-investigated. Sit with that for a second: a fifty-eight-person chart review hardens into the conventional, front-line treatment for an entire disease. That does not happen because the evidence is strong. It happens because the conclusion was already the thing everyone wanted to believe. Our fatphobia in medicine is powerful enough to promote a study that small to settled doctrine, simply because it pointed at the answer we had pre-approved.

Meanwhile the actual frontier of the research has moved. Venous sinus stenosis is now recognized as a finding in the majority of patients, and there is genuine, ongoing scientific debate about whether the narrowing is a consequence of the pressure or a cause of it, a bidirectional loop. That is the live question. That is where the bodies like mine actually are. But the narrowed-neck story requires looking at the specific architecture of a specific skull, and lose ten pounds requires looking at a woman and already knowing the answer.

My own neurologist told me to lose ten pounds. I have a BMI of 23. I have, this year, lost a frightening amount of weight, dangerous, not aspirational. I have a large head and a narrow neck and vessels I can show you on a scan. And the instruction was still: lose ten pounds. There is no version of that recommendation that comes from looking at me. It comes from looking at a category and reciting its caption.

And I want to be clear that none of this is in the past tense. I am not writing from the far side of having been believed. I am writing from inside the problem, which is still actively unfolding, and which has shifted from the people who love me to the institutions meant to treat me, where the same disbelief does its damage with a clerical face. Emergency MRIs were ordered for me within the UCLA system. They were not triaged as emergencies, because of a clerical error: a box not checked, a flag not set. When I tried to get it corrected, I was not believed about my own situation by someone positioned to fix it in a single phone call, a relative who knew the staff directly, who could have closed the gap with one call she declined to make because she did not credit the urgency I was describing. That delayed my care by two and a half months. Two and a half months of rising pressure inside a skull, untreated, while the paperwork said routine.

It is happening again right now, in a quieter key. My neurologist is away for the summer. The physician covering for her has not updated my formal diagnosis from migraine to idiopathic intracranial hypertension, even though I am being actively treated for IIH, with the serious medication and the lumbar puncture that no one prescribes for a migraine. So the chart still says one thing while my treatment says another, and because the chart is what the system reads, that lag is not cosmetic. It is delaying my priority with ophthalmology, the exact specialty that monitors whether I am losing my vision, the forty-percent outcome, the thing this entire essay is named for. The mechanism that could blind me is being slowed not by biology but by a diagnosis code no one has bothered to correct, because correcting it would require taking my account of my own care seriously enough to act on it today.

I don't yet know how to be in relationship with people who will not take me at my word at this level of stakes. I keep waiting to find the boundary of it, the person, the room, the relationship where my account of my own body is finally allowed to stand on its own. And the disorienting thing is how few of those rooms there are, and how many of the people who fail this test are people who genuinely believe they love me. I am not sure love means much if it cannot extend the basic courtesy of belief. You do not get to translate me into my hormones and call the translation devotion.

And I have to say plainly that there is one part of this I still cannot understand, and I have all my clarity back now, so it is not for lack of trying. I am not someone who minimizes by accident. I was taught to. I learned, somewhere early, to say I'm ok, I'm ok, I'm ok, to discount what I felt and carry it quietly and not become anyone's burden. But the thing about a person built that way is that when she finally says I am really not ok, it means something. It is not a thing I do lightly or often. It costs me everything to say it, so I save it for the emergencies, the real ones, the floor-of-the-well moments. And here is the pattern I have lived over and over: I hold the line at I'm ok until I cannot, and then I ask, plainly, for help, and that exact moment, the moment the ask finally comes, is the moment people go quiet and disappear. Not once. Each time. Every emergency has the same shape. I am the one who shows up: I have sat with people through hospital stays, found people jobs, found people apartments, asked for almost nothing back. So when I drop the I'm ok and say I need help, it should be the loudest signal in the room, precisely because it only ever comes from the bottom. And what happens instead is that the people I had shown up for, at the exact moment I say I need them, go quiet. I do not understand it. I have turned it over with a clear head and a calm nervous system and full access to every interpretive tool I own, and it still does not resolve. Why the caretaker is abandoned at the one moment she asks to be cared for is a thing I am going to have to keep not understanding, because no answer I can build makes it acceptable.

So this is the ask, and it is not a large one, though apparently it is rare: take the people you love at their word. When someone tells you what is happening inside their own body, inside their own life, let that be the starting fact and not the thing to be corrected. You are allowed to be wrong about another person's interior once. The first guess is just that, a guess, and there's no shame in it. But when they correct you, when they tell you that your read of their experience is mistaken, that correction is not them being difficult. It is them giving you better information. If you hear it instead as belligerence, as them being unreasonable for refusing your version of their own life, then the belligerent one is you. And the moment you decide you know their experience better than they do, the moment their testimony becomes a symptom to be managed rather than a truth to be received, you have quietly stopped being in relationship with the person, and started being in relationship with your idea of them.

Two days out of a lumbar puncture, I feel better than I have in years. Not better than I did before the crisis that began in March. Better than I have in years. I have likely been living, silently, with this condition the entire time, a condition known for its extreme pain and disorientation, while everyone around me treated the suffering as a question of attitude. Years of it, managed privately and excruciatingly, masked behind the best techniques we have in nervous-system regulation, all while being told I should be trying harder or thinking more positively.

And here is the quiet harm in that, the part I am only now able to see clearly. The pointed advice about my mindset, the steady message that I needed to regulate harder, breathe better, reframe more, think my way to calm, did not damage my body; the fluid did that. But it taught me the exact lesson that kept me from being helped: discount the signal, manage it down, handle it privately, do not make your pain anyone else's problem. The mindset coaching and the disbelief were teaching me the same thing in two voices. The better I got at managing the pain alone, the more invisible the emergency became, until I had perfected the art of looking fine while something mechanical and dangerous went on rising inside my skull. I was handed a method for carrying suffering silently, and then the silence was read as proof there was nothing to carry.

I think about how many people are doing exactly this right now. Holding a real, structural, physical problem at arm's length with breathing and reframing and willpower, told by every authority around them that the work is the cure, never once told that the work is not treating anything, that it is only helping them tolerate, quietly and alone, a dangerous thing no one has bothered to look for. We have built a culture that would rather pathologize a person's testimony of their own pain than investigate it. And the people paying for that preference are, overwhelmingly, the ones already least likely to be believed.

And now the relief is so total it is almost unbelievable. Two days. I went from bedridden to walking half a mile, running errands, strategizing about my own care, writing again. The thing that was wrong with me was not my willingness and not my lack of optimism. The thing that was wrong with me was fluid in my brain. It was always fluid in my brain. The mechanical problem has a mechanical solution and I am already on the road to it. What I am less sure will ever be repaired is the other thing: the discovery of how many people, when handed the plain truth of me, reached instead for the version of me that was easier to believe than to dismiss. Because believing me requires acknowledging that I need help, and that there may be some responsibility implied in that help. Deciding I'm irrational makes pulling back look like a good and moral choice. And in a world awash in the let them theory, we are all supposed to just... let people. Let them ignore the pain that lets a person go blind. Let them be morally blind. I don't like it, and I'm not blind to it. It is a real failure of epistemic trust, and I am naming it as one.

A note on my practice. Since this is my professional home and not only my diary, I will be plain about where things stand. My practice today is small, deliberately so. I see a handful of long-term clients who know my limitations and stay because the work between us is good, and because the kind of therapy I do is built on exactly the depth and continuity I can still offer six people a week. At my best I am excellent at this. I am also, right now, someone who needs home nursing. Both of those are true, and I will not perform a robustness I don't have in order to look more reliable, because performing fine is the precise habit that could have cost me my sight.

And I will say the bitter thing out loud, because the essay has earned it. I have spent my career being the person who holds the room while someone else falls apart. I am very good at it. It is, in some sense, the thing I am for. And in the years I was falling apart myself, telling people in plain language that I was, almost no one held the room for me. Being believed would not have changed my anatomy; the fluid was the fluid. But it would have caught this sooner, and it would have meant I did not have to carry it alone.