Him, a patient? Despite his autoimmune heart sarcoidosis, entrepreneur Robert van der Zwart long refused to accept it until his denial cost him not only his health but also his business.

"Good morning, Mr. Van der Zwart. What would you like for breakfast?"

Two women looked at him kindly, but Robert van der Zwart couldn't get

any words out. "Pen," he managed to say from his hospital bed. He scribbled

some words on a napkin handed to him: stroke, call neurologist, emergency.
One of the women stayed with him while the other rushed down the hall to

find a doctor. Van der Zwart was right. A few days earlier, he had been admitted

to the hospital after suffering cardiac arrest at the gym.

One moment, he was on the cross trainer; the next, he was on the ground. The hospital diagnosed him with a heart rhythm disorder.

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But how could his heart go out of control so quickly? And where did the stroke come from? Van der Zwart was well-informed in the medical world. He had been running a company for almost twenty years that offered medical training webinars for doctors. "We helped pharmaceutical companies showcase their knowledge while providing doctors with the latest developments in bite-sized pieces," he says. He traveled the world to attend medical conferences, network, and gather knowledge.
But what exactly was happening to him now? Neither he nor the cardiologist had a clear answer. Until the latter discussed the case with a fellow doctor who was researching cardiac sarcoidosis, a rare chronic immune system disorder that causes inflammation in organs such as the lungs, skin, or heart. The diagnosis is rarely made: often, cardiac arrest is fatal. A scan confirmed that he indeed had this autoimmune disease.

Van der Zwart remained nonchalant. "A little electric shock to reset the heart, and everything will be fine, that's how I saw it." "I don't travel to areas with subpar healthcare anymore. Has my life gotten worse because of it? I don't think so." 

He had an implantable cardioverter-defibrillator (ICD) implanted to support his heart in case it failed again. Medication was also supposed to help. "At first, it made me very depressed; my condition was completely gone," he says. Yet, he refused to take it easy. He wanted to continue working. Continue with his big BBQ parties in the garden. Continue cycling, heli-skiing, and other sports.

But his body thought otherwise. Within six months, he had two more cardiac arrests. Once, he collapsed during the KLM Open golf tournament. The other time, his heart stopped while climbing the stairs at Driebergen-Zeist train station. The doctors were clear: each time, he could have died.

But the last thing Van der Zwart wanted to do was accept that he was not just an entrepreneur but also a patient. "I see people around me for whom being a patient has become their whole life. I wanted to avoid that at all costs." He buried his head in the sand and returned to work five weeks after the diagnosis.
For the first two weeks, he could still count on understanding, but that quickly faded. "That was partly due to my own attitude, of course. If someone says they're fine and keeps pushing through, you forget that they're sick." He took on new projects, but it no longer went at the same pace as before. "Do you know those KLM houses you get when flying intercontinental business class? I have almost all of them. At medical conferences, we were treated like kings, and I wanted to return to that. But I had to adjust my self-image."

The atmosphere between him and his business partner soured to the point that Van der Zwart eventually decided to sell his shares after nearly twenty years.
Being Vulnerable
First, his body failed him, and now he was also out of work. His most extensive support was the Entrepreneurs' Organization, a network of entrepreneurs he had been a member of for eight years. Every month, ten entrepreneurs came together to discuss business and personal matters. "Stubborn as I am, I said I was doing fine, but I got the questions I really needed. People said they were worried about me and asked how I really felt. Because of their concern, I slowly dared to be vulnerable and admit that I did have to adjust my life."

Not that he wallowed in self-pity. "I don't swim in open water anymore, walk on hot days, or ride a motorcycle. I have to watch my energy and don't travel to areas with subpar healthcare anymore. But has my life gotten worse because of it? I don't think so."
He also slowly resumed his entrepreneurship. "I rented a desk at an office and started brainstorming about the next business. As an entrepreneur, you can run away with an idea, but it was good to have people to spar with."

Everything came under consideration: another medical training company, setting up an AI model with a colleague in the United States. Ultimately, it was the collaboration with doctors that he enjoyed so much in his previous work that led him to his next entrepreneurial venture. "I had seen many of them give painfully boring presentations at conferences. Everyone thanked the study participants and said more research was needed to conclude. Good research is forgotten because of poor communication."
With his new company, Van der Zwart helps doctors give better presentations. He has now helped about a hundred of them. "As an entrepreneur, person, and patient, it gives me much satisfaction to indirectly help bring research into the spotlight. I am an activist without joining a patient association."
He now dares to admit that he really is a patient. "I am now working on regaining trust in my body. That is the next step toward acceptance. Sometimes, the disease flares up, and I am tired and need stronger medication. But at the same time, I just went on vacation to Brittany, where I walked and cycled in the fresh sea air. I focus on what I can do rather than on what has been lost."