For many young people with lupus, the transition to caring for themselves as adults is challenging.
Helping Hands: Exploring nurse-patient relationships
By Leslie Quander Wooldridge
People who live with chronic diseases such as lupus often come to value health care providers who give particularly attentive and effective care. But what many don’t realize is that while you may be grateful for these medical professionals, many of them also appreciate you.
Take Monica Richey, M.S.N., A.N.P.-B.C., G.N.P., a nurse at the Mary Kirkland Center for Lupus Research in New York. “I really enjoy working with lupus patients,” she says. “They are very courageous. They try to live normal lives. They never let lupus define who they are.”
Joyce Okawa, R.N., M.B.E., began her career as a hospital nurse but eventually sought a position that allowed closer connections with patients. “You saw people, and then they left,” she recalls of her discharged hospital patients. So she moved into research and now focuses on cutaneous lupus in the Department of Dermatology at the University of Pennsylvania. Okawa sees patients involved in research studies improve over time. “One patient with whom I bonded was hospitalized frequently—almost terminal,” she says. “But it’s not like that with her now. She received good care and continues to participate in our clinical trials. When you see that momentum, it’s just very rewarding.”
While nurses say they appreciate successes, they know it’s hard for patients to feel fine one moment and then have flares. “The majority of medications work by suppressing the overall immune system,” notes Richey. “In the very near future, I would like to see more target medications that actually stop the disease progression.”
Access to care is also an issue. Kelly Ross Manashil, A.P.R.N., M.S.N., F.N.P.-C., treats patients without insurance. “It’s really my passion,” she says. “I would love for things to be more accessible and for people to get diagnosed earlier.”
Regardless, these nurses are still dedicated and hopeful. “The treatments have gotten better,” says Manashil, who works at Highland Hospital in Oakland, Calif. “To see people rebound from this condition, that’s very exciting.”
Did you know?
Advanced practice nurse Monica Richey, M.S.N., A.N.P.-B.C., G.N.P., offers tips for making your nurse your best resource.
- Get the scoop. Confirm the name of the nurse who works with your doctor, and get his or her contact information.
- Ask for help. Don’t rely on the Internet for guidance between appointments. Call your nurse instead.
- Be encouraged. Lean on your nurse if you’re feeling down, and ask for help finding a support group.
You know the importance of following your doctor’s guidelines about medication, exercise, and rest; reducing stress; and eating a healthy diet. But if you’re like many people with lupus, at one time or another you’ve come across a dietary or herbal supplement that really sounds as though it could help you. So, what do you do?