But this lapse in communication often begins with the patient, he says. “It is partly a learned response. A lot of what they’re suffering is not visible,” he says. “Patients have to be their own advocate because others won’t advocate for you … and that’s not easy for a lot of people to do.”
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Overwhelmingly, 87% of SLE patients and 96% of their supporters said they wished there were more resources available to help handle issues faced by those with the disease—and 50% of the rheumatologists surveyed agreed, admitting to frustration with the limited resources available to educate patients and their families about the disease.
Dr. Lockshin’s institution is doing what they can to help. Their social service department has a lupus support group for patients where they can talk, get advice and connect with others dealing with the disease. Additionally, Dr. Lockshin’s team has initiated a course for medical students about best practices for handling patients with chronic illnesses. “The goal of the course is to hear the unsaid and see the unseen … the hints are there. You have to listen between the lines to things they are alluding to that are easy to dismiss,” Dr. Lockshin says.
* Disclosures: This survey was sponsored and funded by Human Genome Sciences and GlaxoSmithKline. In addition, Dr. Merrill was speaking on behalf of Human Genome Sciences and GlaxoSmithKline as a paid consultant for the purposes of this project.
Alexandra Schultz is a writer based in New Jersey.