A Connecticut dairy farmer spent years being treated for the wrong disease. Brie Hyde started her farm in 2004 after falling in love with agricultural life at the University of Vermont. When her hands began aching, she assumed the farm work was to blame.
According to a report by Healthline, the pain spread from her hands to her feet, ankles, knees, and hips. During summers, she developed fevers. Doctors pointed to Lyme disease, a bacterial infection spread by ticks, and treated her with prednisone and antibiotics. The short courses of steroids brought temporary relief.
"So they'd put me on prednisone and antibiotics, and 10 days on prednisone, you're feeling better. So then it would go away, and I would push through," Hyde said.
The symptoms kept returning and growing stranger. Her feet turned purple in the shower. A lacy pattern appeared under her skin. Sun exposure became painful in an unusual way.
"I would go out in the sun, and it would feel like I was burning from the outside in," she said.
The fatigue became impossible to ignore.
"The crazy fatigue that I was getting and the pain in my hands had gotten to the point where I was like, 'This is not right. There's something not right,'" Hyde said.
Her primary care physician ordered blood tests and found a high Antinuclear Antibody result, which prompted a referral to a rheumatologist. The specialist diagnosed her with systemic lupus erythematosus, known as SLE, the most common form of the disease.
Hyde had not heard of lupus before her diagnosis.
"I honestly remember, I said, 'What the hell is lupus?'" she said. "I had no clue. Not on my radar. No idea what it was."
Her experience is not unusual. Research cited in the Healthline report shows it takes an average of nearly six years for a lupus patient to receive a correct diagnosis. Susan Manzi, MD, Chair of the Allegheny Health Network Medicine Institute, explained why the path is so difficult.
"Symptoms can overlap with those of other conditions and are often present at onset. Combined with test results that vary from person to person, this can make the path to diagnosis complex and far from straightforward," Manzi told Healthline.
Hyde's treatment after diagnosis involved its own long road. Doctors first prescribed prednisone and hydroxychloroquine, a medication commonly used for lupus, but she developed a severe allergic reaction. The next medication made her violently ill. A biologic treatment was also attempted.
Hyde had described herself early on as someone farming completed.
"I was a first-generation female farmer," she said. "Farming is crazy active and very strenuous on your body and time, and that's what completed me. That's what makes me whole."
The disease forced her to reckon with the physical demands that had defined her adult life. Her story draws attention to how symptoms common to lupus, including joint pain, fatigue, skin changes, and sensitivity to sunlight, can mimic other conditions for years before a correct answer is found.
