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You’ve gone from doctor to doctor in search of a diagnosis that would explain your rash, joint pain, and fatigue, and now – finally – there’s a name for what ails you: systemic lupus erythematosus (SLE), better known as lupus.
The first thing you do when you get home? Type lupus into the search bar and ask Dr. Google to weigh in.
“Often, people have seen multiple specialists before they get a definitive lupus diagnosis, and that process can feel very isolating,” says Priscilla Calvache, LCSW, assistant director for Lupus Programs & Community Engagement at Hospital for Special Surgery in New York City. “So now that you have put a name to it, the internet may be the first place you turn.”
It’s a natural impulse, and couldn’t be more convenient. Still, a health-related web search does have its pitfalls.
When jumping from one website to another, you may feel the mounting anxiety associated with cyberchondria, which is caused by obsessively looking for health information online. These days, it’s all too common – and especially understandable when it comes to lupus and its “nonspecific” symptoms. You may have endured months of frustration before getting a diagnosis, and now you’d like to take back some control and learn more about this chronic condition. Luckily, there’s a way to stave off cyberchondria and still learn all you can about lupus. The key is to know how to gauge credibility, how to pace yourself, and what to stay away from when doing your online research.
Here’s how experts say you can research lupus on your own – without freaking out. Keep an Open Mind
Many people have faced lupus and triumphed over it in their own way. However, this doesn’t mean your lupus is identical to that of a woman who shared her own story on a popular lupus blog.
Lupus isn’t the same for everyone, says rheumatologistJill Buyon, MD, director of the Lupus Center at NYU Langone in New York City. A lot of information on the internet, even if it comes from a reputable source, may not apply to your own story. An autoimmune disease that occurs when your body misfires against your skin and joints, lupus can progress and affect your heart, lungs, kidneys, or brain. But some patients experience only mild skin disease and joint pain, according to Buyon.
Although stories that you read online can be helpful and provide hope, it’s important to remember that every case is individual. Go to the Pros
The best starting points for learning more a