Essays on what most people walk past, and the notes: short, true, a bit rude about the system and a lot kinder about the people in it. Chapters of the memoir appear here first.
This archive spans 2016–2026. The work I'm most proud of starts around 2025. Everything before it is where I was figuring out what I was trying to say.
A keynote angle for health systems and pharma events: what changes in the exam room once patients and clinicians both consult AI before the appointment, and what that means for trust.
Every doctor I've ever seen keeps a piece of me. The lab company has my bloodwork. The hospital has my discharge notes. The specialist has the scan. The…
Inflammation is everywhere in chronic illness conversations. "Your body is attacking itself." "The inflammation is the problem." "We need to reduce…
There's a specific kind of clarity that comes from living with migraines for decades. Not the clarity of "I've figured out how to cure this." The clarity…
Mental health isn't the absence of mental illness. It's also not the presence of happiness, or resilience, or any of the other words we use to describe…
My mother has cancer. I used a local AI model to read her oncology records in Hebrew, cross-reference treatment protocols, and ask the questions her doctors didn't have time for.
There's a difference between knowing about depression and knowing depression. Falk Schuster knows depression. Not as a concept. As a morning that doesn't…
There's a specific kind of clarity that comes from studying medicine from the outside. Dr. Margret Jaeger is a medical anthropologist, which means she…
There's a moment in every conversation where you realise the person across from you has lived something you haven't. Not just experienced it, survived it…
Yesterday, Spooniversity went live. Not with fanfare. Not with a countdown. Not with a launch post that performs excitement for an audience. I sent some…
Medical appointments are where patients lose their voice. You walk in with questions. The doctor has ten minutes. You walk out confused. Or you don't get…
The manifesto behind everything. Where the framework came from, what it actually means, and the moment I understood that the illness wasn't being treated because it hadn't been made speakable yet.
The invisible energy tax of every action: the social, professional, and emotional cost of living within severe limits, not only the physical one.
Not negligence. Structural failure. What actually happens inside the diagnostic process when a patient's symptoms don't fit the expected pattern.
I couldn't speak for years. Not that I lost the ability. But after seven years in bed, after months of not talking to anyone, after the dysautonomia made…
Seven years in bed. Then another seven learning how to think differently. This book exists because something shifted. Not in my body, that's still…
I wasn't planning to do this yet. The plan was to build the whole thing properly. All the tracks, the community infrastructure, the onboarding flow that…
When chronic illness strikes, you find yourself on an island. Not a tropical one. Not a quiet retreat. An island with no boats, no bridges, no signal. The…
I spent seven years in bed before I was diagnosed. I spent the next ten years in and out of it. During those years, I tried every online course platform built for education.
There is a specific kind of grief that comes from watching your career dissolve while you're too sick to stop it.
"Just get up." That's what the doctors kept saying. As though the problem was motivation. As though my legs had simply forgotten they had a job and needed…
Why Chronically exists, and what 'honest writing about chronic illness' means when most illness media is built around uplift and resolution.
The worst crashes come after the best days. Why feeling good is a trap for people with chronic illness, and what the world gets wrong about recovery.
Working alone with chronic illness is both harder and better than anyone said. The loneliness is real. The freedom is real. Both things, simultaneously, all the time.
Not advice. Not inspiration. Seven things that became clear when everything else was stripped away, most of them arrived against my will.
The specific terror of building something real, making it public, and watching the users not arrive. On what you do in the silence after you ship.
Getting an exoskeleton changes the physical fact of movement. It doesn't change what it means to have needed one. On the gap between what technology promises and what it delivers.
Someone told me my book helped them while bedbound. I had no way to measure it. On the gap between the impact that gets tracked and the impact that actually matters.
On the impossibility of fitting a multi-dimensional life into a one-word answer, and what happens when you stop trying.
On MCAS, food intolerances, the expanding list of things that cause reactions, and the real grief underneath the semi-serious rant.
Ten years. That's how long it took doctors to find my diagnosis.
I've been chasing specs. For years. Better GPU. Better CPU. More RAM. Faster storage. The next upgrade, the next generation, the next big leap in…
I know two people who built dedicated gaming setups that cost upwards of two thousand euros. Both of them primarily play DOTA. DOTA. The game from 2013…
The Apple Watch Ultra is genuinely impressive. It has an altimeter. A siren that can be heard from 600 feet. Dive modes. A titanium case. Battery that…
I used to have a setup that looked impressive on paper. A full gaming rig with a tower the size of a small child. A monitor that could probably be seen…
On performing wellness for so long that the performance rearranges the furniture in your head. What the body reports when the narrative isn't the true one.
There's a pattern in digital health that I've watched repeat itself for a decade.
Policy is where good intentions go to become actionable, or where they go to die. There's no middle ground.
Mid-pitch, performing confidence while your body is screaming to stop, genuinely unsure if it'll cooperate for the next five hours. That's the reality startup culture doesn't talk about.
Hey everyone,
My research at Management Center Innsbruck found that five days of microlearning produced measurable empathy gains in first-year medical students, largest among the students who started with the least.
Healthcare collects enormous amounts of data. Lab values. Medication adherence. Hospital readmission rates. Quality of life scores. But almost none of it captures what actually ...
MedTech is a strange world.
Healthcare has discovered patient engagement.
I want to name something that chronically ill people do every day and never put on a CV.
Here's a thing that happens to chronically ill people that nobody talks about clearly enough:
It took me almost a decade to get diagnosed.
Ambivalence about recovery isn't weakness or secondary gain. It's what happens when an illness has quietly become the scaffolding for an entire identity.
Last night, during a yoga class meant to be inclusive, I found myself reliving years of medical dismissal. You see, I have an invisible illness, and the teacher, like so many do...
Patients with a platform are starting to shape drug development and patient journey design directly. The compensation and ethics haven't caught up yet.
Standing in a fluorescent-lit office, a colleague asked how I was doing. I chose performance over truth, the way most chronically ill people learn to. What that masking actually costs.
When a woman enters a doctor's office, she hopes to be seen as a human being.
For nine years, I ran toward emergencies.
There's a tax you pay when you're chronically ill. It's not on your payslip. It's not deductible. And nobody who doesn't pay it knows it exists.
Every morning, I open my laptop and willingly walk into a minefield of triggers. My notifications are filled with stories of medical trauma, systemic failures, and chronic pain ...
You know what? I've been thinking a lot lately about this crazy race we're all supposedly running. The one where we're chasing after fancy titles, magazine covers, and those "30...
Thirty-three doctors.
Nights are medication timing and feeding schedules. Bonding from unconventional angles when my body won't cooperate. On being a new father with POTS.
A doctor told me to buy a nice mattress and grow old with dignity.
Hey Friends! 🎤
Iv’e been getting a lot of emails, DM’s and shoutouts asking me to share my public speaking techniques , so here you go!
Here's to another incredible year!
I'm Roi. I spent years lost in a healthcare system that couldn't name what was wrong with me. I found my way out, and I write about what that actually took.
Bedridden, out of options, and out of trust in the system. So I built my own rehab with a pair of rubber bands.
Yesterday was World Mental Health Day, and we're about to rip off the Band-Aid and dive into the messy, uncomfortable truth about our collective psyche.
The journey to wellness often begins with a dizzying array of options, each promising a path to better health. As I stand at this crossroads, I'm faced with a web of possibiliti...
The day my life collapsed, I had a choice. I could continue believing that cruel fate had robbed me of my health, dreams and future. Or I could take responsibility for my situat...
Hey! people tend to take for granted to be able to manage a full day of activity while millions of us can barely do a couple of hours. in this episode I will share some things I...
Hey everyone,
I'm notoriously known for revolutionizing my life from bed. But did I?
So, for those of you who don't know me, I'm Roi.
Hey, I’m Roi and I will use this podcast to help me expand on the my healing journey experiences.
Empathy in medicine is trainable, and it's measurably declining across medical education. What the research says about why, and what's actually shown to reverse it.
So I had a choice to make. Hundreds of threads to pull, and yet I knew each one would tighten the knot on another.
It's a harsh realization: you pull through life with chronic illness, trying to survive day by day, but you are not living.
Nurses buried in data entry, doctors transcribing instead of treating, patients repeating their history at every login. Health IT doesn't need another app. It needs one shared standard.
Patient advocacy groups mostly compete for the same limited attention and funding. They'd do more for patients by sharing infrastructure than by competing for it.
The physical symptoms get all the attention: the pain, the fatigue, the appointments. Having lived with chronic illness for years, the mental toll is just as real, and it's almost never treated as part of the same condition.
Doctors diagnose the problem. Case managers are the ones who actually navigate the system around it. Why that role does more for patient empowerment than most of what claims to.
Caregivers manage the medications, the appointments, and the daily reality of a chronic condition, and healthcare mostly treats them as support staff instead of the experts they've become.
Health knowledge sits locked away in academic language most patients were never taught to read. That's not a patient failing. It's a design failure.
Chronic illness demands two contradictory things at once: acknowledge how real it is, and refuse to be defined only by it. Both, at the same time, all the time.
Women, and anyone read as a woman by the system, wait longer for a diagnosis and get their pain dismissed as hormonal more often. That's not an accident of medicine. It's a documented pattern.
Access to treatment gets all the attention on Rare Disease Day. The loneliness and disbelief patients face daily gets almost none of it, and it isn't unique to rare disease.
Years spent chasing survival, appointment to appointment, taught me how to manage symptoms and made me forget how to actually live. Neglecting wellness has a cost too, even for people who are barely surviving.
Slapping 'patient-centric' on a product doesn't make it one. Patients aren't a data point to analyze. They're the people who should be in the room while the thing is actually being built.
I used to see doctors as the people with the answers. Then I ended up on the other side of the exam table for years, and the empathy I'd assumed was standard turned out to be the exception.
More chronically ill people are sharing stoma bags and feeding tubes on social media without apology. It made me uncomfortable at first. I've come to think that discomfort was the actual problem.
At 25, bedridden for three years with an illness nobody could name, I forgot what health even felt like. Loneliness isn't a side effect of chronic illness. It's part of the disease itself.
What it would actually take for mental healthcare to work the way general practice does: same-day access, integrated records, no stigma, care where people already are.
On the Rabbit R1 and what AI-native hardware could mean for chronic disease management, clinician admin time, and access in regions without specialists, if the design includes patients from the start.
Doctors call it cyberchondria when patients research their own symptoms. It's not distrust. It's a response to feeling shut out of a process that's happening to your own body.
2023 had real progress on patient empowerment. Most of it was still cosmetic. A year-end accounting of what actually changed and what's still theater.
Care still mostly happens to patients, not with them. What empowerment actually requires, and why the system resists giving it up.
Patients aren't clients. We don't come to you shopping for the best deal. We come vulnerable, looking for expertise, yes, but also empathy, and that distinction should shape how care actually gets delivered.
Patient-centricity has become a popular word in healthcare marketing. What it would actually mean if organizations built decisions around it instead of just talking about it.
Patients wait weeks for an appointment, hours in the waiting room, and get minutes with the doctor. Healthcare treats clinician time as scarce and patient time as free.
I built eight organisations from my bed.
My doctor gave me a sticker that says 'slow' to put on my phone. I need the reminder, because every time illness loosens its grip, I try to make up for all the lost time at once.
When I push too hard and end up bedridden for days, I get accused of faking it. Doctors have told me my nerve pain was 'all in my head' because a test didn't show it. This is what dismissal actually looks like.
My POTS self-diagnosis in my late twenties changed everything overnight. What almost nobody talks about is what it does to the mind, not just the body.
Mental healthcare should be as easy to access as calling a doctor for the flu. It still requires fighting insurance loopholes, provider shortages, and a stigma that keeps people in the shadows.
The scale of trauma after October's attacks is straining Israel's mental health system past what it was built for. What the response looks like, and why it has to be more than medical.
I taught a course at IMC Krems on patient narrative, provider resilience, and partnership. Notes on why medical education still trains for encounters, not relationships.
Written in the days after October 7th. Physical wounds mend. The trauma underneath them, in children, in veterans, in everyone who lived through it, needs a place to go too.
A yoga instructor refused to modify poses for my chronic pain. A train conductor demanded I stand up despite a dizzy spell. Ableism isn't rare. It's structural, and it's mostly invisible to the people not experiencing it.
Business leaders constantly seek fresh perspectives and insights to share with our teams and customers. The conventional route is to invite renowned academics, CEOs, and success...
As an entrepreneur living with chronic pain, I've watched limitation get mistaken for weakness. It's usually the opposite: constraint is what built the skills employers actually need.
I see the judging look every time I ask for help on a train or in an airport, because I don't look disabled. Society isn't trained to extend compassion to something it can't see.
Healthcare organizations exist to serve patients, and patient advocacy is still usually an afterthought. Every one of them needs a Chief Patient Officer or a Patient in Residence.
I've never met a chronically ill patient with no emotional involvement in their illness. That means I have a mental illness too. I'm done treating that as something to hide.
Imagine everyone carries an invisible backpack. Some carry a kilo, some ten. You can't tell by looking. That's what life with invisible illness is like, and it raises a real question: whose job is it to name it?
Written after a lot of frustration being a patient keynote speaker. We are experts too. Pay us, treat us, and put us in decision-making positions like one.
Every chronic illness is its own island. Diagnoses that look similar from the outside require completely different navigation once you're actually living on one.
Three terms that get used interchangeably in chronic illness management, and why the difference between them actually matters.
Health literacy gets treated as a patient's reading-and-numeracy problem to fix. It's mostly a systems problem: confusing communication, opaque processes, and power imbalances.
I built Patient School because there was nowhere for chronically ill people to actually learn to manage their own condition, taught partly by patients who'd already done it.
I recently taught storytelling and resiliency to another cohort of Austria's Global Incubator Network. What actually goes into a resiliency toolkit, and why generic advice about it usually fails.
For my master's thesis, I interviewed patients with chronic conditions alongside medical students and doctors. The pattern that came back from the patient side was consistent: they don't feel heard.
A UC Berkeley study found empathy training actually works. Plus a book recommendation on what empathy is for.
As a speaker with chronic illness, I'm both the performer and the audience every day. Plus: what the research says about PAs, NPs, and empathy in medicine.
A study on post-traumatic growth found something worth passing on: doctors who grew from the pandemic were less likely to burn out, not more.
Three short notes: empathy as a medical skill, the barriers chronically ill speakers face on stage, and burnout in entrepreneurs.
A hospital in Vienna left me bleeding on purpose, called it educational, and told me I was a burden. Also: notes from the Global Patient Participation Summit.
Medicine used to happen to patients. It's supposed to happen with them now. A hospital in Vienna reminded me how far that shift still has to go.
On medical gaslighting, a line from my own book, and what wearables actually change about patient outcomes.
I have POTS and post-viral syndrome myself, so a Washington Post piece on Long COVID and dysautonomia landed differently. Also: a KevinMD story on what one held hand can do.
A short newsletter note: what happens when a hospital discharges a patient with nowhere to go, and why patients belong on the conference stage, not just in the audience.
On the last episode of Revolution from Your Bed, season 3: managing expectations between patients, caregivers, and the healthcare professionals treating them.
I built a career on the story of having survived something. Then I relapsed mid-career, in front of the same audiences, and had to figure out what my message was worth if I wasn't fixed after all.
I've made my living from keynotes, talks, and workshops for four years. When the pandemic hit, most speakers weren't ready for their whole business to move online overnight. Here's what I learned patching through it.
I always wanted to be a doctor. Instead I became a patient for a decade, taught myself the diagnosis medicine had missed, and decided healthcare needed fixing more than I needed a medical degree.
I was recently honored to speak at TEDx Shanghai. My doctors gave me three big no's: I would never go to university, never work, never get married. I've done all three.
Longer conversations recorded from the in-between. No schedule. When there's something worth recording, it gets recorded.
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