Radical honest media for the chronically ill. Essays and conversations that didn't fit anywhere else. The antidote to inspiration theater and toxic positivity.
100 pieces, 31 Mar 2016 – 6 Apr 2026.
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.
Ten years. That's how long it took doctors to find my diagnosis.
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.
Conversations about chronic illness, patient advocacy, and what it really costs to keep showing up.
This episode was recorded a while ago. Right after, I had a huge relapse. Podcasting stopped — not by choice, my body made that call. I'm back. Here's that episode.Dr. Hector Rodriguez is an integrative psychiatrist based in Miami. We talk about trauma, complex PTSD, why the ment…
Trigger warning: Trauma, War themes.Surprise! We’ve got an extra episode for you! In this special episode, I am joined by Samah Atout, a Belgian Palestinian advocate and Managing Partner at BIB Partners, to reflect on the incredible insights and experiences shared during the Glob…
In this episode, Roi Shternin and Dr. Margret Jaeger delve into the critical role of medical anthropology in addressing contemporary healthcare challenges. They explore the shortcomings of the modern healthcare system, including its lack of a holistic approach, overspecialization…
In this episode, taken from a keynote at the Digital Health Ljubljana conference, we address the invisible crisis at the heart of the modern healthcare system: the gap between technological innovation and the lived reality of those it’s meant to serve.For too long, digital health…
In today’s episode, I’m joined by Aileen Rice Jones, Head of Public Affairs within Mental Health at Boehringer Ingelheim.This will be Aileen’s first time attending the Global Mental Health Community Summit! With deep expertise in corporate and public affairs, Aileen shares fresh …
This is a special series where I explore my journey as a co-host of Boehringer’s Global Mental Health Community SummitIn Episode 2, I sat down with the incredible Falk Schuster, a dedicated advocate who brings a vital lived experience perspective as someone living with Major Depr…
New podcast series alert.As you all know I’m co-hosting the Global Mental Health Community Summit (GMCS25) this year again, and I’m so excited about it.This year’s event is focused on #RedefiningMentalHealthcareTogether. Boehringer Ingelheim has invited 60 of the most inspiring a…
We often feel like subjects in our own lives—navigated, tested, and surveyed. We all know that email that arrives after a medical appointment: "How did we do?" We fill out the survey, wondering if our patient feedback truly matters.Today, let's reframe that question…
We dive into the critical gap between medical device development and the lived experience of patients. We Need More Patient Voices in MedTech is the essential podcast for innovators, clinicians, patients, and advocates dedicated to ensuring that technology is truly patient-centri…
In this profound reflection, I welcome Linda, a kindred spirit who transformed her own invisible battle with a debilitating chronic migraine. For years, Linda, like many Reflective Wounded Achievers, was defined by struggle, often left bedridden.This conversation maps the critica…
In this one we dive deeper into the state of chronic illness, role of inflammation and the power of patient communities with the founder of InflamMed, A community dedicated to raise awarded and support for chronic conditions caused by inflammation.learn more about their work: htt…
Tired of waiting for someone to go to the movies with? Don't! Discover the unexpected joy and freedom of going to the cinema alone. It's not lonely, it's liberating. Find out why a solo movie date might just be your new favorite thing.Follow my Journey at roishternin.com This is …
Living with a chronic illness is tough enough, but what about the invisible battles you're fighting up top? This podcast dives into the often-overlooked connection between chronic physical conditions and your mental well-being. We're talking real talk about how managing a…
The Wild West of Wellness Data: Why Patient Ownership is the Next RevolutionReturning from a major healthcare conference, Roi Shternin, The Human Advocate1, cuts through the noise of AI promises to tackle an urgent ethical crisis: patient data ownership.This episode is a critical…
Tired of feeling like you have to choose between your chronic illness and your career dreams? You don't have to. As a fellow professional who's navigated this exact path for 18 years, I get the overwhelming challenge. This episode is your guide to creating a fulfilling ca…
What happens when a cancer researcher becomes a patient? Find out in this powerful conversation with Dr. Natasha Punia, a former startup executive who channeled her health journey into founding her own patient community, Inflammed.This episode is a deeply personal dive into the r…
I had the absolute pleasure to host Ursula Mann, a dear friend and colleague who served in senior patient engagement positions in big pharma for many years, to discuss bringing the voice of patients into industry decision-making, technology assessment, and more.Nowadays, Ursula i…
From a Flawed Hero to a Healing Soul: A New Journey BeginsFirst, a heartfelt thank you. Your support throughout my initial journey has been a source of immense strength. You listened as I battled a mysterious illness, cheering me on as I faced the healthcare system.However, that …
Struggling with chronic illness and want to pursue higher education? This week's bite-sized episode tackles the challenges of online learning for those with chronic conditions.We explore the limitations of traditional online programs and discuss a potential solution:Hybrid m…
In this one I share my personal insights from speaking gin 27 countries despite debilitating illness. how I started and how can you utilize your story to move others and change the world.My public speaking course: https://subscribepage.io/ABC-of-Public-Speaking
This week, the Revolution hits close to home.I am beyond thrilled to welcome my sister, Chen, to the mic. If you’ve ever wondered what it looks like to truly bet on yourself, look no further.Chen’s journey is a masterclass in pivoting. She’s gone from mastering the art of pastry …
You know that specific, suffocating feeling?The one where you’re moving at a hundred miles an hour, exhausting yourself every single day, but when you look around, you realize you haven’t actually gone anywhere. It’s not just tiredness; it’s the feeling of being stuck in a loop, …
The new season of Revolution From Your Bed is here, and we are not easing into it. 🔥If you feel like you’ve been living a life pre-approved by someone else—society, your past, the expectations of others—this episode is your cue to burn the old script.I sat down with my long-time…
Are you overlooking the most resilient, innovative talent available? This episode challenges the misconception that disability limits professional performance. We argue that individuals who are disabled or chronically ill possess a unique set of skills forged by years of navigati…
Why is managing expectations the most important skill for a chronically ill patient? Because unmet expectations—from ourselves, our family, or our work—are the fastest route to stress, shame, and a health crash.In this practical and honest episode, we provide a complete guide to …
Are patients just giving feedback, or are they shaping the system? Join us for a deep dive into the Patient in Residence concept—a revolutionary role designed to place the patient's voice directly at the center of healthcare organizational strategy.This episode explores how a…
It’s a painful truth: We know the healthcare system is broken because we live in the rubble of its collapse. As chronically ill patients, we have the lived expertise, the raw data, and the frustration to prove it.But knowing it's broken and knowing how to fix it are two diffe…
There is a silent, profound sting that comes with long-term separation from the world outside your windows.As someone who has spent nearly ten years primarily confined to my home, I know that struggle isn't just physical—it's the constant, quiet battle against solitude.By…
Welcome back to the "Revolution From Your Bed Podcast," where we continue our profound conversation with Kharina Kharran. In the previous episode, we began to unravel the complexities of living with and moving beyond trauma. Today, we delve deeper into the vital topic o…
**Trigger Warning: This episode discusses the impact and healing of trauma. Please listen with care.Have you lost the basic, primal feeling of safety in your own life or even your own body?Healing from trauma is the hardest, most necessary revolution any of us can undertake. In t…
This is a conversation that hits incredibly close to home, and it’s one I’ve been excited to share.How do you redefine life when your body is actively fighting you?For many of us in the Dysautonomia/POTS community, the illness often translates to life lived largely horizontally. …
Welcome back! Season 3 is officially underway! Join me as I chat with the brilliant Lisa Grum, a Growth Mindset Coach dedicated to helping clients turn obstacles into stepping stones.This episode is about radical self-improvement. We explore how professional coaching combined wit…
It's the Season Finale of Revolution From Your Bed! In this special episode, recorded live on Clubhouse, we dive deep into the strategies for turning plans into meaningful action—even when confined by COVID-19 isolation or chronic illness.If you've felt stuck, this is the…
Welcome to an insightful and empowering episode of the "Revolution From Your Bed Podcast." Today, we're addressing a challenging topic that many individuals face, particularly those living with chronic illness: the tendency to end up in toxic or co-dependent relatio…
Patients are being held from their own data and information. In this power-play of medical paternalism, we all lose; what can we do to change it?Amazing Music by Spirante Beathttps://youtu.be/qiiTdrVNNOUGet My book here: https://books2read.com/ap/nOkrbo/Roi-ShterninSupport this p…
Welcome to a thought-provoking episode of the "Revolution From Your Bed Podcast," where we question the fundamental approach of Western medicine to chronic illness and its impact on our lives. Today, we're diving into the complex relationship between patients, the h…
On this episode of the Revolution From Your Bed Podcast, we're tackling a question of sustainability: How can we find a path to physical fitness that supports, rather than strains, our bodies?The answer is simple: Walking. It's a gentle yet effective alternative for those…
In this episode of the "Revolution From Your Bed Podcast," we're shifting gears to the heart-pumping world of entrepreneurship and startups. The landscape is littered with tales of both meteoric rises and spectacular crashes. Yet amidst this volatile arena, one questi…
On this transformative episode of the "Revolution From Your Bed Podcast," we're diving into the life-saving power of storytelling. The ability to effectively communicate your narrative is not just a skill for writers and public speakers—it can be a critical tool in he…
On the latest installment of the "Revolution From Your Bed Podcast," we're diving into the pervasive message that bombards us daily: the notion that we must do it all. The pressure to juggle studying, working, creating, and succeeding all at once can be overwhelming. …
Should you invest in college, or save the money for your unpredictable health needs? This is one of the most stressful financial dilemmas facing the chronically ill community, and this reflective episode tackles it head-on.For those of us dealing with unexpected, high-cost medica…
On the latest installment of the "Revolution From Your Bed Podcast," we delve into the ethereal world of dreams and their role as a powerful motivator in our lives. Dreams fuel our passions, give us direction, and inspire us to reach for the stars. But the big question …
On the latest installment of the "Revolution From Your Bed Podcast," we're tackling the timely subject of New Year's resolutions—a tradition that sparks a mix of hope, determination, and, let's be honest, a bit of skepticism. We've all been there: fired up…
On the latest installment of the "Revolution From Your Bed Podcast," we're peeling back the layers on a topic that's both timely and timeless: the paradox of the creative process. This week, we're not just talking about any story; we're talking about my st…
On the latest installment of the "Revolution From Your Bed Podcast," we're addressing a very emotional and relatable topic that touches many of us: managing expectations from our surroundings while dealing with illness, burnout, or the times when we just need a break.…
On the latest installment of the "Revolution From Your Bed Podcast," we're honored to welcome Dr. Ivana Kostic, a distinguished figure in the health tech community and co-founder of the esteemed Health Tech Lab in Belgrade, Serbia. An MIT alumnus, Dr. Kostic brings a …
In this week's episode of the "Revolution From Your Bed Podcast," we confront the often isolating journey of chronic illness, challenging the dismissive phrase "it's all in your head." Acknowledging the deep loneliness that patients frequently endure, we s…
Miscommunication is one of the biggest problems in our society, Breaking up couples, starting wars, and causing patients pain, suffering, and poor treatment. how can we act instead of reacting, and engage with authentic instead of automatic responses?In today’s episode of the …
Welcome to a profoundly personal episode of the "Revolution From Your Bed Podcast." Today, we delve into a story of transformation—a night that marked the lowest point in my life and the book that became a beacon of hope during that time: "Man's Search for Meaning…
How comfort are our comfort zones? And do we rally need to hit rock bottom in order to start living?In this contemplative episode of the "Revolution From Your Bed Podcast," I take a deep dive into the concept of comfort zones, especially through the lens of chronic illnes…
Welcome to an inspiring episode of the "Revolution From Your Bed Podcast." Today's show is a deeply personal narrative of transformation, resilience, and empowerment. It's about my journey from spending nearly a third of my life in bed due to chronic illness, to r…