Prescription to a revolution or how to create a Patient-Led healthcare

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 always wanted to be a doctor. I didn't know exactly what it involved, but I wanted to help people, save them, give them hope.

I joined the army as a combat soldier, aiming to become a medic. After an injury during training, I started experiencing strange symptoms that got steadily worse, until one day I couldn't function anymore. I was honorably discharged. Not long after, I collapsed completely.

I remember the helplessness of being hospitalized in a corridor of a busy internal ward, staff buckling under the load. That's when I understood what it actually means to be a patient.

I never became a doctor. But I got an education in being a patient that changed the direction of my life.

I spent the next three years cycling through dozens of doctors, some of whom told me terrible things, some who accused me of faking it, none of whom gave me hope. I listened to all of them. Very few listened back. It came to a head when a senior doctor told my parents, while I sat in the room, that they should buy me a nice mattress and connect my room to cable TV, because I would never work a day in my life, never marry, never go to university.

That night, I had a decision to make: heal myself, or let the illness finish the job.

I had almost nothing to hold onto. Bedridden, no diagnosis, no treatment, no real quality of life.

I chose life.

I got hold of every medical school text I could find and started studying medicine from my bed. It took nearly two years, but I reached a diagnosis, and after a serious fight, the medical establishment confirmed it. Dysautonomia, specifically POTS. A condition that can be diagnosed in about five minutes once the obvious differentials are ruled out. It took me five years.

Five years watching friends live their lives on social media while I had none of it.

Once the diagnosis was confirmed, I stopped being the patient who was faking it and became the patient with a rare condition nobody quite knew how to treat. No rehabilitation facility would take me. I had to design my own rehab plan. It took nearly two more years before I learned to walk again, at 27, and went back to school, though not medical school this time. I studied education and entrepreneurship alongside human biology and health education, because fixing healthcare needed a different kind of foundation than practicing medicine would have given me.

Here's what my patient journey should have looked like from the start: a case manager coordinating my care so I'm never navigating the bureaucracy alone. Community-based rehabilitation instead of hospitalization, run by physical and occupational therapists and health coaches, because an HMO's job is health, not sickness. Every clinician trained to communicate with the same care an elite teaching program trains its teachers.

That's not a utopian vision. It's already happening in scattered places around the world. It just hasn't been put together anywhere as a whole system yet.

As Patient in Residence at the Ludwig Boltzmann Institute in Vienna, I built a companion app and worked to get the patient voice into research and into care design directly. As a founder, I built a red-flag detection tool for doctors, and I teach medical professionals better patient communication. What I don't have time to build myself, other people are already building: better PA and NP models, telemedicine, all of it. What's missing is one healthcare system willing to actually treat health instead of only sickness.

Most people with dysautonomia I know have been neglected long enough that many can no longer walk or stand. I'm proof it can go differently.

Healthcare might be the only industry in the world where the customer's opinion doesn't factor into the product. That explains a lot about how it looks, and it's exactly what needs to change.

Our generation grew up with a computer or a smartphone in hand, and grew up aware of what happens when a system ignores the evidence in front of it. That's the same responsibility that applies here: build something more sustainable, more human, and let technology handle the bureaucracy so a doctor can actually focus on the person in front of them.

All I ever wanted, as a patient, was someone to listen instead of typing notes. Doctors study medicine to treat people, not to put out fires. The best diagnosis, motivation, and care I ever received came from a GP, since passed, who led with her heart and her hands before she ever touched a keyboard. She didn't have any of the tools we have now. She had her attention, and it was enough.