[Presence-evoking technologies have frequently been used to simulate, and so help other people understand, what it’s like to have a variety of physical and mental health conditions. The story below from Prevention describes a novel project that uses generative artificial intelligence to help those with a group of rare blood cancers share their experiences. As is often the case, the company behind the project, and in this case the story, has a vested interest, but “The Unseen Journey” is of particular interest to me because I have one of the cancers, polycythemia vera (luckily, my symptoms so far have been less severe than those described here). See the original version of the story, and The Unseen Journey website, for more images and information. –Matthew]

[Image: This is what Ashlee’s fatigue feels like to her, as illustrated through generative AI]

A Photographer’s Rare Blood Cancer Symptoms Come to Life Through Generative AI

Incyte’s The Unseen Journey illustrates the hidden emotional and physical toll of myeloproliferative neoplasms (MPNs), a group of rare, chronic and progressive blood cancers.

By Jill Schildhouse
March 24, 2025

Ashlee has always focused on helping other people bring their ideas to life, whether as a photographer or through her boutique creative agency. Despite her dynamic persona that serves as the driving force for her business, she often wages an invisible battle that is difficult for her put into words: She lives with a rare, chronic blood cancer called polycythemia vera (PV), a type of myeloproliferative neoplasm (MPN). The disease affects how the body produces blood cells and can lead to debilitating symptoms that are challenging to diagnose—and to articulate.

Now, just as Ashlee breathes life into others’ ideas in her professional life, her partnership with The Unseen Journey, a groundbreaking initiative by global biopharmaceutical company Incyte, helps illustrate the physical and emotional toll of her MPN symptoms. The program uses generative artificial intelligence (AI) to create images from the words and experiences of people living with MPNs.

Living with Invisible Symptoms

Like many living with MPNs, Ashlee struggles with “hidden” symptoms that are hard to accurately describe to others, even to her doctors. Fatigue, headaches, and brain fog are her constant companions, disrupting how she manages her career and her personal life. As part of The Unseen Journey program, Ashlee shared her experiences with a team of generative AI experts who worked behind the scenes to transform her words in real time into captivating images that depict her hidden MPN symptoms and journey.

“Fatigue is the most annoying symptom,” she says. “I can sleep well and do everything I’m supposed to do, and it’s still there.” She often imagines it as a room weighed down by heavy furniture and clutter, with “decades-old wallpaper peeling off the walls, and even the statues in the room look tired.”

Her headaches are even more intense. “They feel like being trapped in a burning building,” she says. “You’re trying to find a way out, but the exits are blocked by smoke, flames, or obstacles.”

As for her brain fog, it feels like frosted glass dividing her from her thoughts. “It’s like the perfect ‘golden hour’ sunset is just beyond reach,” Ashlee explains. “I can see it, but it’s blurry, and I can’t quite get there.”

For Ashlee, participation in The Unseen Journey presented a chance to share the experience living with a rare blood cancer in a new and compelling way. “I never thought to explain it in a visual way before,” she says. “The images capture what I’ve always felt but have never been fully able to express.”

Finding Strength in Vulnerability

Ashlee refuses to let her diagnosis define her, “It’s something I live with, not something I suffer from.”

Her PV journey has prompted her to slow down and reassess her priorities. “When you hear the word cancer, it forces you to reevaluate what’s important,” Ashlee says. Today, she focuses on her physical and mental health, while finding joy in the small things, like spending time with her nephew and savoring a cup of coffee.

Through her partnership with The Unseen Journey, Ashlee hopes her story can help educate and inspire others living with MPNs to be diligent in tracking their symptoms and having open and honest conversations with their healthcare team.

Visit TheUnseenJourney.com to learn more about these MPNs and the importance of tracking symptoms.