© Leah Fasten Photography

In Westborough, Mass., some people find it strange that 45-year-old Marianne Crowley gardens at night. Being misunderstood, though, is nothing new to her. For most of her twenties, Crowley had symptoms that felt like severe arthritis. The muscles in her arms and hands atrophied and felt as though they were being pricked with needles. Crowley spent $20,000 for surgeries on her arms and hands, suffered through unexplained miscarriages, and worked with physical therapists, but doctors still couldn't find the source of the trouble. They even called her "a hysterical female."

By the time lupus was diagnosed in 1991, Crowley was already struggling in her personal life. Her friends acted as if she were overreacting or using lupus as an excuse. "I can't be in the sun, so it's hard to do certain things," Crowley explains. Friends would tell her to wear a hat and come outside, but they didn't realize that even reflected light during a car ride could cause flu-like symptoms and diarrhea for days. Avoiding sunlight also explains Crowley's nighttime gardening.

At home, Crowley's life crumbled even more. Her husband resented her disease. "He felt like I would say I wasn't feeling well to get out of doing things," she recalls. "Basically, he wouldn't help with anything." After three years of her husband sleeping on the couch, she finally convinced him to leave. They divorced in 1994. Crowley's children also struggled with her condition. Her daughter, now a 22-year-old living in Ohio, was upset when her mother couldn't go on school trips. "The sicker I got, the worse she behaved," says Crowley. Her 16-year-old son tends to be more understanding, even helping out around the house.

Crowley's divorce made her cautious about relationships; she dated her boyfriend for six years before marrying him. "He's been great. He's a computer person, not an outdoors person, so that helps," she says. "There are things we can do together." She enjoys reading books about history and philosophy. Crowley also dabbles in writing and painting. And as often as possible, she meanders through museums. Her passion for gardening continues, though the scope has changed, especially since she works in her yard only at night.

Crowley keeps her joints loose and her muscles limber with yoga and massage. She also relies heavily on Plaquenil (hydroxychloroquine), which counteracts arthritis and tones down lupus symptoms. "I will be on it forever," says Crowley. Unfortunately, Plaquenil damages the liver and eyes, so Crowley must get frequent blood tests and eye exams. She wanted to try some alternative therapies too, but her rheumatologist threatened to stop treating her if she did.

Crowley pushes on every day. She gets up early to walk her two dogs before the sun comes up and takes them out again late at night. Such long hours, including working as a high school English teacher, exhaust her. "But I love what I am doing," Crowley says, "and I would get bored at home. Plus, it's just not a financial option."