Overcoming the Uncertainties of Living with Chronic Diseases like Lupus
Overcoming the Uncertainties of Living with Chronic Diseases like Lupus

July 21, 2022

Interview with Michael D. Lockshin, MD, MACR
Director Emeritus, Barbara Volcker Center for Women and Rheumatic Disease and Co-Director, Mary Kirkland Center for Lupus Research at Hospital for Special Surgery; Professor of Medicine and Obstetrics-Gynecology at Joan and Sanford Weill College of Medicine of Cornell University


Uncertainty and unpredictability are among the greatest challenges for people with lupus and other chronic diseases, according to renowned rheumatologist and lupus expert Dr. Michael Lockshin.  The discomfort of not knowing starts with the search for a diagnosis and continues through the unpredictable course of the disease over a lifetime.

Dr. Lockshin recently led a two-day workshop at the Hospital for Special Surgery called, “When A Diagnosis Has No Name,” attended by a multidisciplinary group of experts with the goal of examining uncertainty and identifying opportunities for improvement.

Emerging from discussions at the meeting, Dr. Lockshin shared some helpful tips for patients to minimize uncertainty as they navigate their lupus journeys:

  • Pick a physician you can trust and change doctors until you find one with whom you feel comfortable and can work with long-term.
  • Since manifestations of lupus can change over time, find a physician with extensive expertise in lupus to coordinate your care – typically a rheumatologist – who has seen hundreds of people with lupus. While specialists focus on their area of expertise, the rheumatologist looks at the whole body and takes a long term view of your overall care.  He/she will bring in other medical specialists as needed, e.g. a nephrologist if you are experiencing kidney complications to lupus.
  • Insist that your doctors talk with each other and find doctors who work within the same hospital system. It’s easier for everyone involved if your healthcare professionals are within one hospital system and can electronically share your records. But if not, it is your right to ask for communication among your clinicians. If your doctors offer it, you can also apps like MyChart to download notes and results to share with each doctor.
  • Stand up for yourself and participate in your care. It is important to be empowered and probe why a treatment is being recommended or ask for evidence of effectiveness. You also can object to a recommended treatment and ask for possible alternatives.
  • Ask for referrals. If your doctor suggests you see a specialist, ask them to reach out personally to their colleague so you may get an appointment more quickly.
  • Ask your physician for help coping with the challenges of lupus, particularly mental health support which is common in people suffering from chronic diseases. Dr. Lockshin noted that often physicians have contacts among other professionals who offer support services.

When asked his overall advice to people living with lupus and other chronic diseases, Dr. Lockshin emphasized: Communicate, communicate, communicate — and make sure your doctors do as well.  Conquer uncertainty by controlling what you can and remain optimistic. Keep saying to yourself, ‘I will get through this.’”

“Living life one day at a time is a great way to approach living with a chronic disease like lupus,” concluded Dr. Lockshin.

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