People who suffer from lupus often have trouble communicating with family members and doctors about their chronic pain and other symptoms, according to a new survey. Systemic Lupus Erythematosus, also known as SLE, is a chronic inflammatory disease caused by an immune disorder. One and a half million Americans suffer from lupus and at least five million people worldwide.
Roper surveyed 950 people in the lupus community, including 500 patients who were diagnosed with the disease. The remaining participants were family members, caregivers, and rheumatologists. The survey found a “communication gap” between lupus sufferers and the people around them:
• 87% of lupus patients downplayed symptoms in order not to upset family members
• 52 % minimized symptoms to doctors or found symptoms hard to describe
• 72 % of doctors said they were not aware of the severity of their patient symptoms
“This survey highlights some of the challenges I see in my clinic every day,” said Joan Merrill, MD, chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, a leading national lupus center. “I worry about the patients who may have trouble starting a candid conversation with me about how lupus is affecting them and their families. The more we know, the more we may be able to help.”
The survey also found that lupus can impact more than a patient’s health:
• 81% say lupus is like being on a roller coaster – they never know what to expect
• 68% say it affects virtually every relationship they have
• 75% feel family and friends overestimate what they can do
• 67% say family and friends believe they are unmotivated due to lupus.
Lupus can affect almost every part of the body and can cause extreme fatigue, painful and swollen joints, unexplained fever, and skin rash. It also can lead to kidney failure, heart and lung inflammation, central nervous system disorders and inflammation of the blood vessels. All of these symptoms can flare up unexpectedly and are often invisible to others.
Many people with lupus say they have symptoms daily, and the frequency of those symptoms is often underestimated by others. For example, 51 percent of the patients surveyed reported arthritis and joint pain as the most prevalent symptom they experienced every day. However, when doctors were asked to rank the top three most common problems associated with lupus, only 35 percent selected arthritis as the most commonly reported symptom.
Lupus symptoms may come and go over time and are sometimes difficult to pinpoint. Physicians refer to the onset of symptoms as “flares” which can range from mild to severe. Many people have certain symptoms that present themselves prior to a flare. When lupus flares, the patient experiences severe pain and most times must rest or stop their daily routines. Many times, symptoms can cause critical health problems and hospitalization.
Blood tests can detect lupus, and once the patient is aware of the disease, taking an active role in their treatment is vital. Coping with lupus includes finding ways to deal with the stress of everyday life. Many doctors suggest exercise and relaxation techniques. Developing a support system of friends or family, physicians and community support groups can also help.
Lupus patients, doctors and family members agree there is a need for more resources and a stronger, more connected lupus community:
“This survey indicates that there is a real problem with communication, but this is also an opportunity to improve the dialog within the lupus community,” Dr. Merrill said. “People may struggle if they feel isolated and lack a sufficient support network. Rethinking the dynamics of our relationships with people who have a chronic illness can be empowering for all of us.”