What Patients with Lupus Want You to Know

Daily Lives

Physicians must remember that lupus has changed nearly every aspect of their patients’ lives. Daily activities people take for granted, including bathing, washing their hair or going to work, are a struggle for some patients with lupus.

Following is how one patient described her daily struggles: “My elbows, wrists and joints are hurting. I had to retire early because I could no longer do my job. My skin hurts when I’m touched, so intimacy is affected. I have to take sponge baths because it hurts to take a shower. I had to change my wardrobe to things I can easily get in and out of. I wear mainly jogging suits and onesies. Washing my hair is a chore, and I get so exhausted.”

Patient visits average around only 20 minutes, but it is important not to neglect our patient-physician relationships. Patients require not only medical care, but also connection and empathy. They need to know that their physician is in this battle against lupus with them and that they are not alone.

In Sum

Patients want their physicians to explain the potential side effects of their medications, have knowledge about supplements, inquire about their mental health, encourage support groups and acknowledge their daily struggles.

Jacqueline Jansz, MD, is a resident at the University of Illinois, Chicago.

Nadera Sweiss, MD, is a professor of medicine, chief of the Division of Rheumatology and medical director of the Arthritis Clinic at the University of Illinois. She is the founder and director of the Bernie Mac Sarcoidosis Translational Advanced Research Center (STAR).

References

1. Mikuls TR, O’dell JR, Moore GF, et al. Dietary supplement use by rheumatology and internal medicine clinic patients results of a survey questionnaire. J Clin Rheumatol. 1999 Oct;5(5):255–258.
2. Zhang L, Fu T, Yin R, et al. Prevalence of depression and anxiety in systemic lupus erythematosus: A systematic review and meta-analysis. BMC Psychiatry. 2017 Feb;17(1):70.
3. Winzelberg AJ, Classen C, Alpers GW, et al. Evaluation of an internet support group for women with primary breast cancer. Cancer. 2003 Mar;97(5):1164–1173.
4. Contreras G, Lenz O, Pardo V, et al. Outcomes in African Americans and Hispanics with lupus nephritis. Kidney Int. 2006 May;69(10):1846–1851.