Life Isn’t Fair

As a father and a runner, Jesse Lichtenstein has embodied the lemons to lemonade parable.

June 14, 2022

Jesse Lichtenstein calls Portland, Oregon, home. The 42-year-old studied psychology at the University of Oregon and did one year in law at Golden Gate University in San Francisco before becoming a fulltime writer, producer, and director. He might be best known for his role as a writer and producer on No Greater Law, an Emmy-nominated film that premiered at the Tribeca Film Festival in 2018.

These days, when Lichtenstein is not poking at a keyboard or working on a shoot, you can likely find him on the streets and trails around Portland as he prepares for an ultramarathon running race in Utah at the end of May. What you cannot see when you look at Lichtenstein, however, is the psoriatic arthritis (PsA) diagnosis that stokes his fire.

The Medical Term: ‘It Sucks’

Like far too many others, Lichtenstein’s journey to discovering his PsA and finding an effective treatment was a long and winding road with several wrong turns. He was first told that the pain in his hand was from an injury – though he could not recall any trauma or overuse. He was then told that his orthopedic injury needed surgery. Eager to get back to a pain-free life, Lichtenstein went along with the diagnosis, only to feel the problem worsen despite multiple operations.

Finally, a friend who works in health care steered him in the right direction, and Lichtenstein was diagnosed with PsA in 2020.

“The diagnosis thing was so hard to describe if you don’t have the experience of it,” says Lichtenstein. “Especially going from this perception of it being an orthopedic injury and having multiple surgeries, to then the truth of it being that it’s this disease. That was really disturbing – kind of scary – and worse in a lot of ways. When you realize that it’s your own body’s dysfunctional immune system signaling, and your body is doing it to yourself, it’s not a good feeling.”

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Lichtenstein’s experience is common. Many of you with PsA are nodding as you read this because it is a disease that is difficult for health care providers to diagnose. Unlike rheumatoid arthritis, which can be detected with a blood test, there is no reliable diagnostic test for PsA. The lack of a test leads to misdiagnosis or delayed diagnosis. And as was the case with Lichtenstein, that can mean permanent joint damage takes hold before treatment begins. This is why the National Psoriasis Foundation (NPF) has been funding the PsA Diagnostic Test Grant for years and will continue to do so until this community has the reliable, repeatable diagnostic test you deserve.

Everyone reacts to a chronic disease diagnosis differently. In Lichtenstein’s case, the misdiagnosis seems to have really ticked him off. It lit a spark of anger. Then the unfairness of a disease that strikes for unknown reasons fanned the flames. “What is the evolutionary reason this exists?” he asked me. I could hear the frustration in his voice, and there was a healthy tinge of snark. He half smiled. “I didn’t smoke. It’s not from high blood pressure. It’s not from anything I did,” he says. “So it’s shocking, and then it’s worse than shocking because it’s not known how to reverse it, and there’s no cure for it. ‘It sucks’ is the medical term for it.”

Life Isn’t Fair

Almost as a challenge to his new chronic companion, Lichtenstein laced up and piled up the miles. He got in touch with NPF and shared his plan: Face PsA head on, hit the roads and trails with vigor, and fundraise for a diagnostic test and cure while doing it.

He started with the Portland Half Marathon in October 2021, and he plans to run a 50k ultramarathon in Bryce Canyon, Utah, in late May. “It looks amazing and terrifying and brutal and gorgeous,” he says. Then in the fall, Lichtenstein intends to tackle the Chicago Marathon. He is also considering the New York City Marathon in the fall.

So now we know how Lichtenstein handles the drama and unfairness of life with a chronic disease. “That’s the world,” he says. “I’m a dad. I have two kids, and I’m constantly teaching them that life is unfair. The world is unfair.

“You have to deal with adversity and difficult situations,” he adds. “You have to have the grit and discipline to handle whatever is thrown at you. You can moan about it. You can complain that it’s not fair. But it doesn’t change anything. You have to just get the job done.”

What’s Next?

We will check back in with Lichtenstein after his Bryce Canyon 31-mile adventure at the end of PsA Action Month. You can find that story in Advance. Before then, you can learn more about the PsA Diagnostic Test Grant or make a gift in support of it.

[Photos by Dane Baraz]

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Author

Matt Werbach

Title

Associate Director, Media and Communications