Brie Hyde always loved the outdoors and animals. She studied at the University of Vermont and launched a dairy farm in Connecticut in 2004, proud to be a first-generation female farmer. Farming’s physical demands fit her lifestyle — until unexplained pain and exhaustion began to intrude.
Early in her farming career Hyde developed intense pain in her hands, which she initially blamed on long days of work. Over time the pain spread to her feet, ankles, knees and hips. In summer months she began running fevers. She would rub her hands constantly and later noticed odd changes like a lacy pattern beneath her skin, purple feet in the shower, and severe sensitivity to sunlight that felt like burning from the inside out. Most striking was the fatigue: “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,’” she said.
Doctors first treated her for Lyme disease, prescribing antibiotics and short courses of prednisone. The steroids would temporarily ease symptoms, so she pushed through her work, but the relief never lasted. When her primary care physician ordered blood tests, an elevated antinuclear antibody (ANA) result prompted a referral to a rheumatologist. Hyde had never heard of lupus before her appointment. The specialist diagnosed systemic lupus erythematosus (SLE), the most common form of lupus.
Hyde’s experience is not uncommon: symptoms of lupus often overlap with other conditions, and diagnosis can be delayed. Research suggests people can wait years for an accurate lupus diagnosis because signs vary widely and lab results aren’t always definitive. As one physician told her, symptoms can be misleading, yet what’s happening inside the body can be damaging even when outward signs fluctuate.
Treatment proved to be a long process of trial and error. Prednisone and hydroxychloroquine were tried first, but Hyde developed a severe allergic reaction to hydroxychloroquine. Other medications made her violently ill, and one biologic did not help. The side effects and uncertainty took an emotional toll. For a while she wanted to stop trying more treatments. “Either I’m taking too many medications to take the side effects away, or these medications are making me sick and I’m not getting any better,” she recalled.
Her rheumatologist urged her to continue because, beyond symptom relief, treatment protects organs from long-term damage. In March 2023 she began receiving Saphnelo infusion, a newer therapy for SLE. The change was dramatic: “I didn’t realize how sick I was until now because I feel better,” she said. The infusion helped restore parts of her former life — she returned to work on the farm, takes vacations with her children, and is able to participate in family life again.
While newer self-administered biologics are expanding options and convenience for many patients, access can still be uneven. Greater availability of at-home treatments can reduce travel burdens and improve disease control, allowing patients to manage lupus more flexibly with their doctors.
Hyde still experiences flares and must carefully manage triggers, especially sun exposure, which reliably brings on bad flares. She plans social events, workdays and travel with limits in mind and weighs the risks of large gatherings as an immunocompromised person. Beyond the physical effects, lupus challenged her sense of identity: she went from a very active, independent woman to someone who had to accept limits and ask for help. Over time, she says surviving the disease reshaped her understanding of resilience: “I feel like I’m even stronger because I’ve gone through this. I’m even more independent. I’m even more resilient.”
By sharing her story, Hyde hopes to help others navigating confusing symptoms, failed medications and the emotional uncertainty that often accompanies autoimmune disease. Her journey highlights the importance of persistent evaluation, thoughtful treatment choices, and the growing role of newer therapies that can restore function and quality of life for people with lupus.
