Contraindicated

Hot Baths and MS: When Diagnosis Meant Getting Into a Tub

Before MRIs. Before lumbar punctures. Before McDonald criteria. If doctors suspected you had multiple sclerosis in the mid-20th century, they had a diagnostic tool: they'd put you in a hot bath and see if you glitched out.

I'm not kidding.

The Hot Bath Test (1950-1983)

In 1950, the hot bath test was developed as a diagnostic tool for MS and was used until the early 1980s, when MRI and cerebrospinal fluid analysis replaced it. The concept was straightforward: if lying in a bath of warm water caused or worsened your neurological symptoms, it was taken as evidence that you had multiple sclerosis.

The test capitalized on what's now called Uhthoff's Phenomenon: the temporary worsening of MS symptoms when body temperature rises. Between 60% and 80% of people with MS experience heat sensitivity, and over 80% of MS patients develop neurological signs during hyperthermia, with 60% of those being "new" symptoms the patient hadn't experienced before.

So yeah. Getting into hot water could make you lose vision, develop weakness, experience numbness, or reveal symptoms you didn't even know you had. Wild diagnostic strategy. But also a giant disruptor of normal life for many of us.

Wilhelm Uhthoff and the 1890 Observation

In 1890, German ophthalmologist Wilhelm Uhthoff first described exercise-induced amblyopia (vision problems) in multiple sclerosis patients. He observed 4 out of 100 MS patients who developed reversible vision symptoms from increased body temperature, describing it as "marked deterioration of visual acuity during physical exercise and exhausting."

Here's the thing: when Uhthoff studied this phenomenon, he thought exercise was the cause and he missed that it was actually the elevation in body temperature doing the damage. It took six decades for someone to connect the dots and turn heat exposure into a diagnostic tool.

The phenomenon wasn't named after him until 1961, when another researcher gave it the eponym "Uhthoff's Phenomenon."

Why Hot Baths Reveal MS

The mechanism is fascinating. Demyelinated nerves (the hallmark of MS) are extremely sensitive to temperature changes. When you heat up the body, partially demyelinated axons basically stop conducting nerve signals properly. The symptoms are always temporary, lasting less than 24 hours, and resolve once the body returns to normal temperature.

This is why MS patients throughout history complained about: symptoms worsening in summer; problems after hot showers or baths; issues during fever or infection; difficulties in hot climates; and trouble after exercise.

They weren't imagining it. Their nervous systems were literally temperature-dependent.

Why We Stopped Using Hot Baths for Diagnosis

A 1983 study found that the hot bath test was abnormal in only 35% of patients with definite MS, and rarely added diagnostic information when other tests were available. Plus, you know, it had "potential complications," which is a polite way of saying "making sick people get into hot water to make them sicker is maybe not ideal."

By 1980, MRI technology advanced enough to visualize demyelinating lesions directly. Why make someone temporarily worse when you can just... look at their brain and spinal cord?

The Irony

The hot bath test represents a weird moment in medical history where we used the disease's own mechanism against itself for diagnosis. We made people experience pseudo-relapses to confirm they had the thing causing the pseudo-relapses.

And here's the kicker: until 1983, clinicians were recommending that MS patients stay home if outside temperature exceeded 30°C (86°F), avoid tanning, use sunglasses, and limit physical exertion. The phenomenon Uhthoff described in 1890 dictated MS rehabilitation strategy for over 100 years, limiting the use of thermal treatments and restricting aerobic exercise.

We've since figured out that controlled exercise and physical therapy are actually beneficial for MS patients, but for decades, heat sensitivity shaped the entire approach to MS management.

What This Tells Us About Diagnosis

The hot bath test is a perfect example of how diagnostic tools evolve. In 1950, it was state-of-the-art. By 1983, it was obsolete. Today, it's a historical curiosity; though the phenomenon itself remains extremely relevant for MS patients managing daily life.

It also highlights something important: sometimes the body tells you exactly what's wrong, if you're paying attention. Heat sensitivity isn't a vague complaint. It's a specific, reproducible, physiological response to demyelination.

The question is whether anyone's listening.

PS: Personal anecdata: I survived living in Phoenix, Arizona and went from being a desert-rat kid that played outside in the heat, endless soccer games in 110°F+ temps, to being absolutely wilted from age 14+. The difference in pictures of me as a prepubescent and thus presymptomatic kid and a suddenly indoorsy kid are stark.

Sources

• Panginikkod S, et al. (2022). Uhthoff Phenomenon. StatPearls.
• Opara JA, et al. (2016). Uhthoff's phenomenon 125 years later: what do we know today? J Med Life.
• Rolak LA, Ashizawa T. (1983). The hot bath test. JAMA.

Book Recommendation

T. Jock Murray's Multiple Sclerosis: The History of a Disease (Demos Medical Publishing, 2005) is an excellent, accessible history of MS from medieval case reports through modern treatment. Murray covers the hot bath test, Uhthoff's work, and the evolution of diagnostic criteria in fascinating detail.

Uhthoff's Hijab Incident of 2025

Prologue: Bellevue Hospital Emergency Room, September 2025: Second Day of Rosh Hashanah

The EMTs don't ask questions. They're professionals and to them I'm just another neighborhood woman who needs to get to the hospital. My lil kitten Bobo plays with one of them as we run through the basic vitals and tests in the context of the "sudden vision changes, family history of strokes." From their perspective I'm probably just a local woman with a scary situation who talks about her "husband" (my dear fiancé) who will feed Bobo as soon as he gets home.

They load me into the ambulance and get me to Bellevue. That's the job. Maimonides doesn't have an MRI in their ER after all.

Frankly I had been sobbing for hours before I called them. The world looked like I was wearing goggles filled with half-set gelatin for over 24 hours, which was my definite cutoff for calling EMTs. Double vision, everything swimming and unstable. A cognitive fog that made me feel drunk even after years of sobriety. Slurring words every now and again. That's pretty stroke-y.

But I couldn't trust what I was seeing. I couldn't trust what I was feeling. I was a traumatized autistic woman who had abandoned working in tech the year before. I was under pressure from every angle.

One truth I knew: panic attacks don't do this.

My body had been putting me in time-out for years: the falls, the urinary incontinence that sometimes stuck around after respiratory infections, the right leg that wouldn't always support me or lift the foot correctly, all the times I'd show up somewhere and my body would just quit on me. How I couldn't carry single-lady groceries home from even half a mile away anymore. But I'd always found ways to work around it, ignore it, explain it away. Not this time.

The timing was cosmically absurd. My symptoms had started the day before, on the first day of Rosh Hashanah. Now it's the second day, and here I am: a Muslim convert since March 2020, being rushed to the ER during one of the holiest days of the Jewish calendar.

If that's not kismet, nothing is.

In triage they move fast. The symptoms say stroke: young-ish woman, sudden vision problems, neurological presentation; so they're not taking chances after I got brought in by EMTs. Some young nurse wasted a few minutes trying to run an IV in the hand of a woman who had used nicotine longer than she'd been alive. My mayonnaise pale skin flirting with striking blue veins misled her the same as they had other clinicians through the years.

Importantly, I get wheeled back for a CT scan almost immediately.

The scan comes back clean. No stroke. No bleed. No acute anything that shows up on CT.

I watch the shift happen in real time. The urgency deflated but then picked up a queer kind of speed again.

At first, clinically, Not Stroke means... what? Psychiatric? Migraine? The previous times I'd shown up at ERs in the recent past: facial numbness in January 2022 at Coney Island. And I told them about my urinary issues, and they saw my clearly altered gait in 2024 at Brooklyn's Maimonides ER, where they wanted to keep me because the ER didn't have an MRI and the attending physician was gnashing her teeth urging me to get the MRI because she thought she knew exactly what she saw.

But I couldn't afford to go inpatient and miss work at my new job, so I hobbled out and saw a physical therapist once. Once. And he noted hyperreactive kneecaps and admonished me to see a neurologist before it was too late in his too-intense Post-Soviet middle-aged Russian way.

It was refreshingly honest.

But this time, in the Bellevue ER, someone calls the neuro and there is an MRI.

The medical students arrive first, a small cluster of them trailing the resident who's doing their neurology rotation. They look impossibly young. I cover one eye at a time to get better looks at them. These kids never had a MySpace and think Vön Dutch hats are vintage.

They examine me: test my vision, check my reflexes, watch how my eyes move. I can feel them cataloging everything. Over and over and over again they wave blinding lights at my malfunctioning jello puddle eyes as I recount the progression of the symptoms over the past 48 to 72 hours.

I work in a homeless shelter with spotty temperature controls. I've been overheating as I wear nice polyester chiffon hijabs in my business casual best. I have been eating a Snickers bar before my shift every day for 10 days to try and beat back the despair and fatigue.

Then I hear them whispering. "Uhthoff's?" I see the students reacting like they're testing each other on something they had recently learned, which I was perfectly embodying. Another one flashes a bright light in my eyes and they watch each eye wobble in its own way. "Uhthoff's" is repeated by the chorus of students. My tentative sense of joy starts creeping in. A kind of optimism born of this validation.

Yet another student flashes the pen flashlight across my eyes.

"Uhthoff's." They definitively mumble. Someone won a bet.

I know that word. One of my good friends is a neurologist; I used to hang around her med school parties back in the day, a Hashimoto's thyroid example that everyone got to play at clinically groping when they were drinking. I'd absorbed enough medical vocabulary through osmosis to know: Uhthoff's phenomenon. Heat-triggered neurological problems.

Vintage neurology lore from the Olden Days: Hot-bath Tests.

Uhthoff's means screen for MS.

The students are looking at me differently now. I'm not just a patient, I'm a case. A textbook presentation happening in real time right in front of them. One of them asks me about the temperature of my baths. My quivering optimism grows.

I cannot wait for the MRI any more than they can.

They wheel me back for imaging. The MRI takes forever: the rhythmic banging and whirring, the contrast injection, the instruction to hold still while the machine maps out whatever's happening inside my skull. I lie there thinking about the timeline. Age fourteen, ninth grade in Arizona, when the Lhermitte's sign started: those electric shock sensations down my spine. The heat intolerance that made me quit soccer. The fatigue that nobody believed. Age fifteen when I started smoking for "mental clarity," which I thought was teenage rebellion but was probably just self-medicating cognitive symptoms I didn't have words for. The symbolic logic I couldn't process anymore in my twenties even though I'd been good at it before. All the times I knew something was wrong and nobody would investigate.

Twenty-eight years of my body trying to tell me something and everyone, including me, finding ways not to listen. Over the next few days I would revisit this sequence of very specific degradations with a tempered sense of urgency because the mystery would be solved soon.

They wheel me back to the ER bay to wait for results. The IV is still in my arm. I'm exhausted. The vision is still gelatin.

When the ER attending neurologist comes to talk to me, she's younger than me. White woman, careful professional manner. She has the imaging results. She seems cautious. I can see her clearly if I keep one eye covered. I tell her that I saw the results on MyChart before she came.

She stands placidly neutral, watching my face. "The pattern is consistent with demyelinating disease. Do you know what that means?"

And something breaks open in my chest. Not breaking like shattering: breaking like a door that's been locked for decades finally swinging wide.

"That looks like an MS MRI," I tell her. I can hear my voice getting stronger, more confident, and almost happier with my relief flooding through. "It looks like basic, kinda obvious MS."

She looks startled by my reaction. People don't usually sound elated when you tell them they might have MS.

But I am elated. I'm freed. I'm vindicated. I call it Vanilla MS because it is so basic on the images. After twenty-eight years of symptoms, after doctors dismissing the heat intolerance and the mystery weakness and the cognitive crashes, after being told it was psychiatric or stress or just in my head in all the wrong ways, here's proof. Physical, visible, undeniable proof that something has been wrong with my brain and spine all along. It was real. It was always real.

"It's honestly kind of funny," I hear myself saying with amateur, ignorant confidence, "that this wasn't caught in previous ER visits. Especially Coney Island in January 2022. The facial numbness visit? Weakness? That was clearly MS too."

She's looking at me like she's trying to figure out if I'm processing this appropriately, if I'm in denial or shock. But I'm neither. I'm just relieved. The wall I've been hitting my whole life finally has a name.

They admit me. Not just for observation: for treatment, for workup, for whatever comes next. I get moved upstairs to a regular floor, still hooked up to an IV. They start me on steroids. High-dose methylprednisolone, the standard treatment for MS flares.

And my vision starts to come back.

Not immediately; it's gradual, like the gelatin slowly draining away. But I can feel it happening. The double images start to resolve. The swimming sensation stabilizes. Hour by hour, I can see more clearly.

The food sucks. 65 grams of carbs for diabetic meals. I start picking apart my stay to keep my brain busy. I still feel like I've had a few beers. That's the cognitive fog.

The next day, the medical students from the night before come back. The UN of NYC med school students that look like high schoolers. They're with Dr. Howard, the attending, and they're doing rounds. My fiancé is there too, sitting in the chair beside my bed. There's a translator on speakerphone because my fiancé's English is a work in progress for complicated topics and nobody wants anything lost in translation.

The room is chaos: the medical team clustered around my bed, the speakerphone crackling, my fiancé looking worried and confused and trying to follow along. The students do their presentation: multiple sclerosis presumed diagnosis pending antibody tests to exclude optical nerve-specific pathology and rule out other demyelinating conditions. The students take turns and walk through my MRI findings: the multiple white matter lesions, some with peripheral enhancement showing active inflammation, some older and scarred. Brain and spine both involved. The restricted diffusion in some lesions, which only shows up in about ten to fourteen percent of acute MS cases. Years of disease activity mapped out in imaging.

I'm proud of them, as someone who dropped out of academia before getting that MPH, with my social circle including clinicians who I still remember being that young, high schooler-looking medical student.

And then one of the students looks at me, really looks at me in a way that I will always remember, and I can see the relief and warmth in their face. My eyes are better. The gelatin jiggle is gone. The stinging pain is mostly gone from my eyes. The vision has stabilized. I'm looking back at them with eyes that work.

It's a palpable moment. They're awed. Not just by the textbook presentation, but by watching it resolve in real time. Watching neuroplasticity happen. Watching the steroids work. Watching a body repair itself just enough to function again.

Dr. Howard is more clinical, more measured. The confidence of experience; and he's able to present a textbook case of vanilla MS symptoms to kiddos that just studied that in recent memory. He talks about treatment options, disease-modifying therapies, what comes next. He emails me the Welcome to MS book he wrote. Dr. Howard's name isn't new to me; he's written about public health topics that I had read.

But that one student is still looking at me like I'm a small miracle. And maybe I am. Not because my disease is special, but because they got to see the moment when someone's body stops betraying them long enough to start making sense.

The translator is relaying everything to my fiancé in his strongest language. I can hear the careful precision in her voice, making sure nothing gets lost between the gravity of the situation and its complexity. My fiancé nods, asks questions, holds my hand.

It is not like his father's brain cancer.

I think about the timeline again. Rosh Hashanah. The first day, when symptoms started. The second day, when I ended up at Bellevue.

I converted to Islam in March 2020, during the first COVID lockdown. I chose it when I knew I was fading, when I needed Allah closer to face whatever was coming. But I still know what these days mean to the community I came from. I know what it means that my body chose this particular moment to finally force the truth into the open.

Multiple Sclerosis. Twenty-eight years of plain as day definitive symptoms being undiagnosed. As I laid in bed for those days in the hospital I retrospectively evaluated the progression of symptoms and dialed in to being 14 years old when the undeniable symptoms started. Here I was, age forty-two when it got named.

They discharged me two days later with neurology referrals, prescriptions for more steroids, instructions for follow-up. My vision was nearly back to normal. The flare was temporary. The lesions are permanent, but the acute inflammation is controlled. For now.

I go home with a tentative diagnosis, which solidified on charts a couple days later when the labs came in: vanilla basic Multiple Sclerosis.

A name for the wall I've been hitting my entire adult life. After decades of being dismissed, of being told it was psychiatric or stress or just me not trying hard enough, after years of my body putting me in time-out and nobody believing it was real, I finally have proof.

And for the first time in my life, it feels like I have permission.

Permission to be weak. Permission to ask for help. Permission to stop pretending I'm fine when I'm not. Permission to name the wall so other people can finally see it too and help me navigate around it humanely.

The diagnosis didn't cure anything. It didn't fix anything. But it gave me language. It gave me proof. It gave me the right to take up space with my limitations instead of constantly apologizing for them.

Rosh Hashanah. The second day. An ex-Jewish now Muslim woman diagnosed with MS by a team that included young medical students and a translator on speakerphone.

If that's not the most absurdly perfect beginning to a story about navigating chronic illness across cultures and identities and failing systems, I don't know what is.

Personal Case Post: What Compliance Actually Looked Like

This week I wrote about how clinical "compliance" assumes privileges most patients don't have. As someone that has spent a distressingly large number of years in online patient advocacy spaces, I've sometimes been asked: was I non-compliant with medications before I found ones that worked?

No. I was extremely compliant. That's the problem.

The Cronenbergesque Joy of Reviewing Historical Data

I took SSRIs for years. Prozac, Zoloft, Lexapro, others I've forgotten. Exactly as prescribed. Full trial periods: six weeks, eight weeks, twelve weeks. They did nothing for my anxiety, or made it worse, or made me feel nothing at all, which is different from feeling calm.

Benzodiazepines made me foggy and disconnected but not less anxious. The anxiety was still there, but just... harder to articulate. Like being trapped behind frosted glass. Just watching yourself not get better.

When I read my old medical notes now, there's this weird body horror to it. Not the obvious kind; not the MS lesions or the chemotherapy destroying my immune system. The subtle kind. Watching past-me compliance-perform my way through treatments that were chemically incapable of working for my neurology. Watching the clinical narrative frame that failure as mine.

Basically: "Patient remains anxious despite multiple medication trials."

And never: these medications aren't designed for autistic neurology.

Just: patient remains broken.

The only antidepressant that ever helped was Wellbutrin, and it didn't work the way it was supposed to. It made my anxiety coherent instead of treating it. Feral panic became focused existential dread. I could think through it instead of just surviving it. It civilized my autistic anxiety enough that I could function through MS fatigue by running on terror with a purpose.

The other medication that actually worked was cyproheptadine, prescribed in 2013 by a psychiatrist who'd treated trauma clients at the VA. Turns out my childhood was like fucking Nam, and the clinicians who understood combat trauma were better equipped than standard psychiatric approaches.

Sadly, I can't take it anymore (cognitive side effects after the September brain damage are really pronounced) but it worked when nothing else did.

My pattern: medications that worked were prescribed by clinicians who understood complex presentations. Not standard approaches.

Now I'm on Buspar and Guanfacine thanks to having a neurologist who is also a psychiatrist.

The Technical Part

SSRIs broadly increase serotonin across your whole system. For autistic neurology already dealing with sensory overwhelm and emotional dysregulation, flooding the system destabilizes everything. It's like turning up all the volume knobs at once when some channels are already too loud and others are too quiet.

Benzodiazepines force GABA calm; they sedate your nervous system. For autistic hyperarousal, it's throwing a blanket over a fire alarm. The alarm is still going off, you just can't respond anymore. (This is not fun. I could never understand recreational use of these drugs.)

Buspar gently modulates specific serotonin receptors instead of flooding the whole system. Guanfacine targets the norepinephrine system: the actual fight-or-flight response driving autistic hyperarousal.

So, basically: for the first time in my life, I'm sleeping peacefully.

The Bigger Picture

My compliance was never the problem. I took every medication exactly as prescribed. The treatment approach was wrong from the start.

The compliance framework assumes the prescribed treatment is appropriate. If it doesn't work, the failure must be patient-side. Treatment-resistant. Difficult. Fundamentally broken.

But treatment resistance isn't always about the patient. Sometimes it's about prescribing neurotypical treatments for neurodivergent conditions.

This flaw in the framework extends beyond psychiatry: I'm now on Rituximab for my MS as of November 10th 2025. It was delivered to my hospital chair with a big ole CHEMOTHERAPY bag tag. Targeted immune system demolition. It's working, I guess. But it changes nothing. Existence continues as it oscillates between casual body horror and really fucking cinematic body horror. The combination of chemotherapy working AND anxiety medication that works with my neurology means I can actually rest while my immune system gets strategically destroyed and rebuilt.

I spent decades being compliant with treatments that couldn't work for my specific physiology. The medical narrative framed it as my failure.

This is why I felt so triumphant in the ER in September when the med school kiddos were saying words I knew meant "lmao lol yea some kind of MS" and fawned over me being something "uncommon" from their textbook rather than "just another fat, poor, middle-aged white woman having a panic attack."

As med students watched in respectful awe while my Uhthoff's-roasted eyes quivered in their sockets with pendular nystagmus, it was almost transcendent for me. I was being validated.

The compliance framework assumes your neurology matches the neurology the treatments were designed for. When it doesn't, you can be perfectly compliant and still fail to improve. The system will still frame that as your problem.

If twenty years ago someone had said "SSRIs aren't working, let's try something that targets norepinephrine dysregulation instead," I would have slept peacefully twenty years earlier.

I was compliant every time I had health insurance good enough to seek care.

But the medications were wrong. The framework blamed me.

That's not an edge case. That's a fundamental design flaw.

And I will treasure every moment of improved life I have while surviving this dynamic.

Livejournal-ass Post About Psychosocial Intake Questionnaires

The Intake Interview Problem

This week I wanted to publish the prologue of my memoir project but I've been busier than planned, between both myself and my beloved partner/fiancé being sick and just... life.

I'm setting up with a new provider network. This means intake interviews. Every new clinician needs the full psychosocial history. Standard procedure. I get it.

Here's the problem: my psychosocial history is complex; basically it is a bingo card of Adverse Childhood Experiences. And in other risk categories for bad treatment: I am an overweight woman without "normal" insurance.

I've got decades of different psychiatric diagnoses and what turned out to be undiagnosed Multiple Sclerosis impacting my cognitive and behavioral life in very noticeable ways. It was a huge blessing that in 2013 I had a psychiatrist who noticed the pattern of very valid causes of my crashouts and noted the relationship between seasonal heat and a cognitive degradation.

But for years prior to that my neurological symptoms got shunted into the psych category because my childhood was a nightmare and I had the PTSD diagnosis to prove it. Fatigue that didn't improve with antidepressants? Depression. The cognitive symptoms: brain fog, word-finding problems, executive function collapse: all attributed to trauma response. Anxiety that wouldn't respond to SSRIs? Treatment-resistant psychiatric disease.

Turns out my brain has some autistic neurology and has been having holes burned into it by my immune system. Literal demyelinating lesions. For decades.

But nobody looked because I had the wrong kind of history and everything got swept under a rug after I did enough therapy that I no longer qualified for a PTSD label; thanks to being diligent about therapy and hungry to address the issues holding me down and back in this world.

And in 2025 we're well past the 10-year medical record retention limit US states have. I'm a blank slate and my medical life has to reboot with zero resources, which means I am at the mercy of random overworked clinicians finding me trustworthy.

Am I going to end up in a situation again, where I am a fucking raccoon digging through trashcan diagnoses to seek the truth and relief yet again while I look for a safe, clinical setting to grant me relief to some of the inconvenient as fuck anxiety issues my brain inflicts on life?

The Pattern Recognition Problem

I've learned not to be believed. That's the pattern I've internalized over 28 years of diagnostic delay. God willing there's no brutal cycle of veracity being tested with clinical trauma. Again.

So when I sit down for intake interviews now, I'm doing this fucked-up calculation. How much do I disclose? If I mention the childhood stuff, does that color how they interpret my current symptoms? If I don't mention it, am I withholding relevant medical history?

By my reasoning: withholding is a kind of lying in a lot of contexts and it is not productive to avoid truthfully answering about the kinds of abuse my mother and her accomplices carried out. If more of my teachers and community members had been aware, some incidents could have made the news.

I mention the trauma history because it's medically relevant. But I watch their face when I do. It hurts me to make them uncomfortable when I talk about kindergarten.

And I can see the moment my credibility shifts. Suddenly I'm not a patient with complex medical history. I'm a patient with psychiatric history reporting physical symptoms. The symptoms don't change. The MS lesions don't disappear from the MRI. But the frame changes.

The Cognitive Load

The September 2025 flare got me diagnosed. Vision loss. ER trip. Finally someone looked at my brain the right way.

The cognitive damage since then is real. Executive function. Processing speed. Working memory. I'm not wholly who I was before September even after I have bounced back a tiny bit from being the stuttering wreck that could barely walk.

I know my timeline. I've written about it diligently since September as I coalesce it into a memoir. A monument to my sense of freedom as the missing piece got diagnosed.

The facts are consistent because these things happened: I am an autistic trauma survivor with a history of PTSD and Generalized Anxiety Disorder. But reciting it over and over to strangers who are deciding whether to believe me? While I'm trying to gauge how much to disclose without tanking my credibility? That's exhausting.

I conducted the most recent one as a sloppy autistic bitch who's sick of masking. Just exhausted. Couldn't perform neurotypical anymore even if I wanted to. The cognitive energy isn't there.

The Exhaustion

I'm so fucking tired.

Tired of explaining. Tired of managing how my history gets received. Tired of watching for the shift in their expression when I mention certain events. Tired of doing damage control in real-time while also trying to give them accurate medical information.

The system demands this. Every new provider needs the intake. But the system doesn't account for what it costs to do this over and over when your history makes clinicians skeptical and your cognitive function is compromised by the disease they didn't catch for three decades.

There's no good solution. I can't not do the intakes. But every one feels like an audition for my own credibility.

I'm doing it anyway. Because I need the care. But this isn't just paperwork. This is trauma on top of disability on top of medical neglect playing out in real-time in a 50-minute appointment where I'm trying to sound coherent enough to deserve treatment.

I am an autistic trauma survivor with a history of PTSD and Generalized Anxiety Disorder. Oh and also I have a Real, Physical Problem called MS that impacts me cognitively which in turn emotionally impacts me. And I told my neurologist how disturbing the 2025 cognitive degradation is to me after a life spent surviving by wits alone.

So far 2025 is hurting me more than the 2013 flare, or the 2009 cognitive impact that had my professors telling me that I was essentially a different student than the one they had in 2008.

But people with some kinds of trauma are inherently untrustable, unreliable, and just too-broken to proactively seek care like I have for decades.