Study Suggests Looking Up Symptoms Can Help Patients Get a Better Diagnosis

For people who live with chronic illness, experiencing symptoms from our condition or conditions for the first time can be very confusing. If you’re waiting to see a doctor, or if a doctor dismissed your symptoms entirely, you might do what most people do when they’re dealing with a question they don’t know the answer to — turn to Google.

When I first got sick with what I later learned was systemic urticarial vasculitis, I was very overwhelmed. Every time I went to the emergency room with breathing issues or severe pain, doctors told me that my anxiety was causing these problems, and did not look further than lupus when I asked to be tested for autoimmune disorders. I knew from looking online that my symptoms matched that of an autoimmune disorder, and when I found a doctor who finally believed I had a chronic condition, he evaluated me for autoimmune disorders like I asked. Turns out I was right: I was diagnosed with vasculitis, which is an autoimmune disorder.

Looking up your symptoms can help you get a better diagnosis, according to new research. A study published in JAMA Network Open in March found that patients who searched the internet for health information for their symptoms had a small increase in diagnostic accuracy. The researchers conducted this study by asking 5,000 people who are not doctors to assess vignettes of 48 people and try to find out what health condition they may be experiencing. The people who participated in the study filled out a survey. The researchers wrote that “contrary to concerns of its harmfulness, an internet search was associated with modest improvements in diagnosis but had no association with triage.”

While this study suggests that there are benefits to looking up health information about symptoms you or someone else may be experiencing, there are still pros and cons to self-diagnosing yourself based on what you read online. I did not personally self-diagnose myself — I was just fairly certain that I had an autoimmune disorder.

In an article for The Mighty, contributor Alexandra Kaye, who self-diagnosed herself with Ehlers-Danlos syndrome, wrote about why she is an advocate for self-diagnosing. Kaye self-diagnosed herself after doctors dismissed her symptoms, which is something that I experienced too. “Had I not figured out what was wrong, had I not advocated for myself, I may not even have a diagnosis now,” Kaye wrote. “I could still be questioning my sanity and feeling like a failure for not being able to do ‘normal’ things.”