Chronic illness wasn’t a new experience for Marilyn. When she was in her 20s, she was diagnosed with essential thrombocythemia (ET), a type of myeloproliferative neoplasms (MPN), which is a disease that causes the overproduction of blood platelets and can lead to dangerous clotting. Marilyn’s doctors discovered her ET after she experienced complications with her pregnancies, but thanks to her medical team, she was able to manage her diagnosis through medicine and regular blood testing. That allowed her to start a family, earn her teaching certification to become an elementary school teacher, and build a vibrant life full of friends, travel, and adventure.

But 30 years later, Marilyn started experiencing new symptoms. For instance, one of her doctors remarked on the fact that Marilyn had an enlarged spleen. But since it was part of her medical history, she “just kind of blew it off.” She also began feeling feverish, itchy, and having night sweats, which she chalked up to menopause. And when the fatigue and bone pain set in, she brushed it off as “just getting old.”

Unfortunately, Marilyn’s symptoms continued worsening, and making it through the day became a struggle. Her exhaustion led to brain fog, which made it hard to concentrate. In fact, one day she found herself “watering silk flowers on her desk,” which she didn’t realize until one of her young students pointed it out. Marilyn recalls that in those days, she only had enough energy to “get through today’s lessons, kids, and problems,” and planning for the future felt like an impossible task. It wasn’t until she was on a family trip to visit her daughter that she realized she was experiencing something more serious than the aches and pains of middle age.

After sleeping on her daughter’s pull-out bed for a few nights, the back of Marilyn’s legs had “turned completely black and blue” from bumping them on the edge of the bed frame. And although she’d always been an easy bruiser, that along with her other symptoms prompted her to visit her doctor, who ran a series of blood tests. They revealed that Marilyn had developed myelofibrosis (MF), a disease that causes a person’s bone marrow to scar. That leads to symptoms like bruising, extreme fatigue, and abdominal discomfort that can be caused by an enlarged spleen.

Marilyn’s MF made it hard for her to continue teaching, and she had to step away from her career. It also meant that she had to adapt to accommodate her fatigue levels, but her strong support system made that easier. For example, Marilyn and her husband Jack had always made a great team—so they found new ways to lean on each other. They worked out a new laundry routine where Marilyn would throw the dirty clothes down from the second floor, so Jack could load the washer. Then Marilyn would handle the washing, and Jack would take the folded clothes back upstairs.

Marilyn’s friends also made adjustments, so she felt welcome and cared for. Her long-time quilting group ensured Marilyn had the support she needed to participate in group activities—and the space to rest once she got tired. “We get together and still have a great time,” Marilyn explains, “and they don’t mind me going to bed at 7:30 when they stay up sewing until midnight!”

As Marilyn shared her MF story with The Unseen Journey team, generative artificial intelligence experts turned her words into vivid visual depictions of what it feels like to live with her MPN symptoms. Marilyn could see her experiences—both the good and the bad—reflected in the AI images.

Marilyn still has tough days, but she knows that her life is full of people that she can lean on. Marilyn explains that when someone has MF, they don’t always “look sick,” but that doesn’t mean they don’t feel sick. She hopes people pause before jumping to conclusions about other people and wishes “people could understand that whenever someone doesn’t feel good, they’re not being lazy.”

Marilyn has taken her own advice and has found balance between managing her MPN symptoms and continuing to live a vibrant life. She spends time with her family and travels, and plans to travel everywhere from the Grand Canyon to the Czech Republic. By being open with her care team and the people who love her, Marilyn has the support she needs to navigate life with MPN.