I've always wanted to be a Doctor, I didn't know exactly what it entails, but I really wanted to help people, save them and give them hope.
I joined the army as a combat soldier, aiming to be an army medic, but soon Everything changed; after an injury, I sustained during training, I started to experience strange symptoms that got worse until one day, I could not function anymore, I was honorably discharged to my own faith, but not long after, I finally collapsed...
My hospitalization felt helpless, lying on a corridor in a busy internal ward where the staff gave in under the enormous burden. I realized what it is like to be a patient.
I didn't make this dream come true, and I didn't become a Doctor, But I had the privilege of learning what it is like to be a patient, and that experience changed my life.
I spent the next three years running around between dozens of doctors who told me terrible stuff and even accused me of faking my illness but never gave me hope. I have listened to dozens of doctors, but very few have listened to my story. It all led to the moment a very senior Doctor told my parents while ignoring my presence in the room That they would buy me a nice mattress and connect my room to a cable TV because I was never going to work a day in my life, marry a woman or go to university.
That night after coming home, I had to decide. Decide whether I am healing myself, Or killing myself.
I didn't have much to live for; I was bedridden, with zero quality of life and no hope of getting better. I still didn't have a diagnosis or a treatment,
I chose life.
I acquired any medical school material I could get my hands on and started to study medicine from my bed. It took me almost 2 years, but I had my diagnosis, and after many fights, this diagnosis was confirmed by the medical establishment.
My illness, Dysautonomia and specifically POTS syndrome, Could be diagnosed in about 5 minutes after ruling out all the basic differential diagnoses; it took me 5 years.
5 lost years of seeing my friends on social media living their lives; I had none.
Suddenly, Healthcare was on my side, but from a patient who fakes his own illness in their view, I became a patient with a rare illness they can't treat. No rehabilitation facility would accept me. I had to hack health care again and design my rehabilitation plan. It took me nearly 2 more years to get back on my feet, learning to walk again at the age of 27 and going back to school, But not medical school this time.
I decided Healthcare should be fixed, so I went and studied education and entrepreneurship alongside human biology and health education. I needed a solid ground to grow from, so I could fix Healthcare.
Now imagine my Patient journey as it should have been
My community medicine is coordinated by a case manager; I'm no longer alone. I do not involve myself in any bureaucracy whatsoever. When I feel alone, I check in with my Patient Companion bot and am assisted by an online and offline moderated patient community.
Photo by Philine Hoffmann
My rehabilitation does not require hospitalization; it is conducted at a community site, at home using tech, and followed by PTs and OTs and health coaches. Because HMOs are dealing with health, not with sickness.
Every medical professional I encounter speaks to me and is respectful, costumed to my personality manner and with a motivational aspect; they have been trained this way in school, just like elite teachers programs train their teachers.
I reflect on my feelings and focus on keeping myself healthy.
This is not a Eutopic vision; this is a disseminated reality happening in several places around the globe but yet to be consolidated.
In my role as the patient in residence at the Ludwig Boltzmann Institute in Vienna, Austria, I developed a companion app and promoted the patient voice in research and in Healthcare; as a startup founder, I have developed a red flag detecting tool for the doctor, and I also teach medical professionals about better patient communication, What my time does not enable me to do is being done by amazing others, We have the means to lower stress from our Doctors, We have wonderful PA's and NP's, WE have telemedicine tools and all the rest above. We just need one brave HMO to stop dealing with sickness rather than health.
Most of my fellow Dysautonomia sufferers have been so neglected that many cannot walk or stand anymore. I'm the proof it can be done differently.
But not all patient is knowledgeable in medicine or stubbed enough. Amazingly, Healthcare is the only industry in the world the customer opinion doesn't matter, That explains how it looks, and we must change it.
It is our generation's responsibility as ones who grow up with a PC or smartphone to break the ties of medical bureaucracy; as a generation aware of the consequences of the ecological crisis, we need to aspire to a sustainable future, Also in Healthcare, Emphasizing its humanity, assisted by technology. It's not only about better patient experience but it'salso about billions saved by reducing medical errors, working years, and even death.
All I needed and wanted as a patient and human being was someone to listen to me instead of typing in the visit notes or dealing with medical bureaucracy. Tech can solve this, and The Doctor can focus on the person sitting in front or, even better, next to him.
It is our generation's responsibility as ones who grow up with a PC or smartphone to break the ties of medical bureaucracy; as a generation aware of the consequences of the ecological crisis, we need to aspire to a sustainable future, Also in Healthcare, Emphasizing its humanity, assisted by technology. It's not only about better patient experience but also about billions saved by reducing medical errors, working years, and even death.
All I needed and wanted as a patient and human being was someone to listen to me instead of typing in the visit notes or dealing with medical bureaucracy. Tech can solve this, and The Doctor can focus on the person sitting in front or, even better, next to him.
Doctors study medicine to treat people, not to put out fires. Let's help them do their jobs in the best possible way and never forget that the best diagnosis, motivation, and empowerment are based on human interaction, touch, and empowering talk. I will never forget my GP RIP, that used to hug, touch, empower, and educate the health and only then deal with the medical bureaucracy; she didn't have any computer or assistive tools, only her heart, mind, and expertise.