5 Things Lupus Patients Want Their Doctors to Know

Wendy Rodgers, 41, of Santa Monica CA was diagnosed with lupus in 2000. A life-threatening flare put her in intensive care for six months. She later developed kidney failure, leading to dialysis and an eventual kidney transplant. Her experiences prompted her to become active in patient advocacy and education initiatives through organizations such as the Lupus Foundation of America. Her 15-year battle against lupus and experience helping other patients cope with the disease informs the following “wish list” of the things lupus patients want doctors to remember:

#1: If We Look OK, Please Don’t Assume We Feel OK.

As someone who’s often in the public eye, Rodgers is careful to look well-groomed, fresh-faced, and fashionably attired, even though this takes longer than usual due to her illness.

One morning, when she entered her nephrologist’s office, his eyes lit up at the sight of her. “Wow, you look like Beyonce today!” he exclaimed. Rodgers’ response was less enthusiastic: “Wow, I don’t feel like Beyonce today.”

For many patients with what she calls a ‘look good, feel bad’ disease, this misunderstanding is a foremost concern. “Lupus patients get very frustrated," Rodgers says, "when doctors judge how well they feel by how they look.”

At worst,  an impressive appearance and demeanor may distract a doctor from warning signs that need immediate attention, Rodgers says. To get a clear picture, she says, it’s important to look past appearances and ask detailed questions about how patients are feeling and functioning. She advises patients to keep a detailed journal and show it to the doctor at every visit.

“If you have lupus, you live every day with some level of pain,” Rodgers says. “Even though I’ve been in remission for five years, I still live with more pain than the average person. Lupus patients often don’t talk about the level of pain they’re experiencing until they have to.”

#2: Pay More Attention to Our Personal Lives.

“Personal-life issues are a huge contributor to how a person feels about their lupus,” Rodgers says. “But these are things that aren’t often addressed in the doctor’s office.”

Any stressor can trigger a lupus flare, she says, from dealing with an unruly teenager to caring for a sick parent to losing one’s home or job.

Rodgers vividly remembers the time she broke down in tears at her doctor’s office after a financial setback forced her to leave her apartment and move in with a relative. “I came from a middle-class family and never experienced any financial distress until I got sick,” she says. “I lost my career, my marriage-everything. It was a huge blow.”

Unaware of a patient's personal circumstances, a doctor may give unintentional offense-for instance, advising a single mother who works two jobs to "just go home and get some rest."

Be willing to ask about personal issues that may affect a patient's condition, Rodgers advises. Relating on a basic human level-exchanging details about relatives, kids, hobbies, and personal issues-puts doctors in a better position to help lupus patients. Such exchanges can strengthen your bond with the patient, and may lead to better treatment plans and outcomes.

#3: Lupus Makes Us Afraid-Very Afraid.

Rodgers recently lost two friends to lupus. “One was only 43 years old and the other was in his 30s,” she says. “When you see that happen, there’s a shock that goes out among the lupus community because you realize, ‘That could be me.’”

“Most patients are very afraid of the repercussions of the disease," she adds, and all of them live with at least a subconscious fear of premature death.

Doctors may not be aware of this fear, and patients may be unable to express it.

Be especially watchful for signs of overwhelming and difficult-to-control fear in lupus patients who don’t have a good support system, Rodgers advises. “I was fortunate. My mom relocated to California to help care for me and my daughter, but not every patient is so lucky.”

#4: Going Back to Work Is Harder Than You Think.

Doctors often encourage their patients-especially those in remission-to rejoin the workforce. Easier said than done, especially when illness has prevented someone from keeping their skills and credentials current.

Rogers’ medical ordeals kept her out of the workforce for 12 years. “It was very difficult and financially distressing to try to get back into the workforce,” she says. “Even with two degrees, it was hard for me to go back into my field.” Eventually she took a teaching job at a private school that didn't require a California teaching certification.

The economy is tough enough for workers who haven’t struggled with a life-changing illness. Lupus patients may need to find additional training in their field of expertise or to launch an entirely new career. “All of this takes time and money,” Rodgers says.

#5: We Want You to Be Our Partner

Doctors need to be aware that patients look up to them, not only as medical experts but also as trustworthy partners. “Patients are looking for that anchor in the storm,” Rodgers says. “They’re really looking for you to be that little piece of sanity in the craziness of this disease.”

Especially for patients who aren't naturally outgoing, she adds, it's important to open a line of communication that makes patients feel comfortable saying anything. Also, be aware that using terms that go over their heads may make patients feel ignorant, which will discourage them from asking questions or offering information.

Rodgers emphasizes that this “wish list” isn’t intended to bash doctors. "We really do value what they do for us," Rodgers stresses, "and we really want to work with them as a team so we can be healthier and help ourselves.”