Not to be confused with systemic lupus, discoid lupus is a chronic skin condition that results in inflamed sores and scarring that can appear anywhere on the body, but is commonly found in areas regularly exposed to sunlight. As a result, patients tend to exhibit facial, scalp and ear scarring, oftentimes resulting in hair loss.
Describing her experience as a teenager with discoid lupus, Sheppherd remembers: “I went to the hospital a couple of times, but that’s about it.”
Then, in college, she began to experience intense muscle pain.
“I did my own research and realized my symptoms matched with fibromyalgia,” explained Sheppherd. “My rheumatologist never confirmed or denied this and didn’t diagnose me with fibromyalgia. When I changed rheumatologists, he saw in my file that’s what my last rheumatologist had been treating me for, but I had no idea!”
Fibromyalgia is a chronic condition that results in widespread pain and exhaustion, sometimes making it difficult to complete simple tasks, like getting out of bed.
For Sheppherd, who lives in Texas, the fatigue caused by fibromyalgia is debilitating. An active athlete and musician in high school, she was forced to slow down once she reached college. Eventually she sought help at her university’s Office of Disability Accommodations when her symptoms began to impact her school work.
Since enrolling in a master’s program, Sheppherd has been able to take online classes, which helps her to manage stress. While she is quick to point out that most of her professors have been accommodating and willing to work with her when her symptoms flare up, one professor made it nearly impossible for her to successfully complete his class.
Explained Sheppherd: “Usually I submit a form to my professor requesting accommodations due to chronic illness and they’re happy to work with me. For one of my classes, however, the professor emailed me and said he doesn’t accept accommodations for his class. It resulted in a lot of unneeded stress, a lot of flare-ups, fatigue and pain. It impacted my entire life. I had to see my therapist on campus.”
Sheppherd was eventually able to complete the class – but not without some outside help, likely from an administrator contacting the professor about the situation. She was invited to speak with her program’s board about what they can do to help chronic disease patients succeed.
“There are so many people who, like me, were diagnosed when they were young, and this life is all they know: doctor’s visits, medication, frustration,” said Sheppherd. “For those who have recently been diagnosed, no one is there to tell them what’s ahead. Because of discoid lupus, I had to cut my hair because lupus took all of it, and that’s OK. That’s what sickness looks like. That’s what illness is.”
Sheppherd will graduate from her master’s program this month and promises to continue to advocate for chronic disease patients: “The more voices that are out there, the more likely something will get done. I’m already getting things done – going to my program’s board to talk about chronic illness will make a difference.”