Getting the Support You Need When You're Living With Lupus
Yogyakarta. Living with Lupus is not easy. The chronic disease, which causes the body's immune system to attack its own healthy tissues and organs, often has no outward manifestations, and thus, making it difficult for other people to believe that the patients are actually ill.
Though medication helps, people living with Lupus remain prone to chronic fatigue and debilitating pains, which affect their ability to work and study.
"I often feel depressed," Yuniarti Astuti, a Lupus patient from Solo, said during a discussion held by local pharmaceutical company Combiphar at Sardjito Hospital in Yogyakarta on World Lupus Day on Wednesday (10/05). "Sometimes, I feel I'd rather die than continue living like this."
The hall, filled with around 150 people living with Lupus and their doctors, grew silent as the 22-year-old narrated her story.
Yuniarti was diagnosed with Lupus last year after a series of unexplained fevers and aches.
After her diagnosis, she was prescribed with a high dose of methylprednisolone, which causes drastic weight gain and mood swings.
While still grappling with her diagnosis and medication, the final-year student at Universitas Sebelas Maret also has to struggle to finish her university thesis.
"There are days when I feel pain all over my body and just want to lie in bed," she said. "But my parents wouldn't understand. They're always urging me to get up and not to be lazy."
Yuniarti's story sounds familiar to people living with Lupus and their doctors.
"It is common for Lupus patients to experience depression and psychosis," Sardjito Hospital's resident immunologist Dr. Sumadiono said.
According to the immunologist, the depression and psychosis among Lupus patients can be caused by several factors, including the disease attacking the patient's nervous system, side-effects of the medication, as well as a psychological reaction to the reality of having to live with the chronic disease.
"Supports from friends and family are necessary for Lupus patients to accept their condition, continue with their medication and live well," Sumadi said.
During the discussion, the doctors detailed some steps that Lupus patients can take in order to get the support they need to survive the chronic disease.
Ask for help
"Communication is key," Dr. Rini Sunaring Putri, the director of Sardjito Hospital, said.
"Tell your doctor about your situation," Rini said. "The doctor will write a letter explaining your condition or refer you to a hospital's UPKRS unit."
UPKRS, or the hospital health promotion unit, is a special unit of a hospital that helps to educate patients and the people around them about their illnesses.
"A UPKRS officer will invite first your parents to the hospital to explain about your condition," Rini said to Yuniarti.
According to Rini, UPKRS can also help the patients invite doctors to come to their schools or offices to explain about their health condition.
Join a community
"Lupus communities help people living with Lupus gain a better understanding of their condition," internist and head of the Indonesia Systemic Lupus Erythematosus Association (Pesli), Dr. Dedy Nur Wachid, said. "These communities also provide people living with Lupus the moral and emotional support that they need."
There are several major Lupus communities in Indonesia, including the Indonesia Lupus Foundation (YLI), Syamsi Dhuha and Pesli. These communities have branches in several big cities in the country.
There are also smaller Lupus support groups in almost every city in Indonesia.
You can ask your doctor about the Lupus support groups in your city.
Seek psychological help
"During consultation sessions, doctors usually observe Lupus patients for variations in behaviors," immunologist Dr. Sumadiono said. "We'll refer you to a psychologist or a psychiatrist, if needed."
Psychiatrists will usually prescribe Lupus patients with antidepressants to relieve stress and depression.
"However, it's much better if the patients can learn to rise up by themselves," Sumadiono said.
Seek spiritual support
"Keep praying," rheumatologist Prof. Dr. Nyoman Kertia said. "Praying releases stress and helps you to accept your situation better."
Lupus patients are advised to change their lifestyle: avoid stress, avoid getting overly tired and avoid direct exposure to sunlight.
"There's no cure for Lupus yet," the professor said. "But with modern medication and support from friends and families, Lupus patients can still lead a good life."
According to a 2013 data from the Indonesia Lupus Foundation (YLI), there are approximately 13,300 people living with Lupus in Indonesia.
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