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 about lupus are large professional organizations, such as the Lupus Foundation of America, the Lupus Research Alliance, and the American College of Rheumatology, Buyon says.
Hospital, university, and medical school websites also offer vetted articles that are written in patient-friendly language. For a list of helpful lupus resources, go to the Office on Women’s Health, a government site from the U.S. Department of Health and Human Services.
Buyon notes that the resource doesn’t necessarily have to be a .gov, .org, or .edu site to offer credible information. “There are dot-com sites that are perfectly fine,” she says. What’s essential is that you evaluate what you are reading with a discerning eye. Bear in mind Buyon’s criteria:
- Is there university backing? This speaks to credibility.
- Who wrote the article? Is it by a medical doctor or a qualified journalist?
Look for articles written or reviewed by doctors. You can also check a site’s editorial advisory board to see who is involved in creating the content (Pro tip: Type the doctor/author’s name into PubMed to see if they have published anything about lupus in peer-reviewed medical journals).
Check the Dates
Always consider when the article was written or last updated, Calvache says. “Lupus treatment has evolved, so if you are reading something outdated, there may be a new treatment that wasn’t available years ago.” If the article isn’t new, make sure it has been updated in the past year (the date is often located at the top or bottom of the article).
Information overload is common right after a lupus diagnosis, according to Calvache. Take a deep breath, prioritize your concerns, and focus on what is most pressing to you at that moment, such as potential side effects of your new medication. This will help you narrow your search and prevent you from becoming overwhelmed. “If something hits home, write it down and ask your health care team to work through those concerns with you,” Calvache adds.
Avoid the Red Flags
Certain words – “cure” and “miracle” for example – may signal that what you’re reading is likely misleading if not flat-out inaccurate. A rule of thumb: If something sounds too good to be true, it probably is. “Anything that requires buying an online product is also suspect,” says Michelle Petri, MD, director of the Hopkins Lupus Center in Baltimore. “The problem with surfing the net is that there are so many unproven remedies out there that can have really bad side effects and cause people to become afraid of our mainstream medications.”
Petri’s advice: If you read something about a diet, supplement, or other alternative treatment, discuss it with your doctor first.
Consider Support Groups
Lupus support groups, both in person and online, can be a good way to get information and learn coping techniques. But Petri maintains that these groups are not right for everyone at every stage of lupus: “They can be scary if you are newly diagnosed and don’t have many symptoms, as a lot of people in these groups have more advanced lupus.” Still, for some people, especially those who are isolated, support groups can be extremely helpful.
Listen to Your Doctor
If a patient is confused and upset about lupus and what their future holds, Petri focuses on treatment. For example: “If I am starting someone on hydroxychloroquine [Plaquenil], I will discuss how it helps with skin and joint symptoms and can prevent lupus from spreading to organs and help survival,” she says. “It’s a good-news story that there is a drug already available that prevents lupus from getting worse.”