Beth Skrzyniarz from Franklin, MA was in the ER when she finally began to come to, having no recollection of calling her brother for help, going to the hospital or having a CAT scan. Luckily, her tests all came up clean, leading the doctors to discharge her concluding she’d had an episode of transient global amnesia (TGA). Though relieved her diagnosis wasn’t serious, the doctors didn’t really explain what caused her episode or what to expect going forward. “So, beginning at 1:30 a.m. the night I was admitted, I started reading online,” Skrzyniarz says, looking for anything and everything she could learn about TGA only to be horrified by some of the comments she found.
She’d also felt some numbness and tingling, which led her toward information about multiple sclerosis (MS) — and some intense anxiety. “I was convinced I might have another episode. I couldn’t sleep because how was I going to live alone, take care of my dogs, work with MS? I was convinced I had to sell my house and give my dogs away. I was terrified to leave my house or drive. What if I panic and don't react in time and cause an accident? The thoughts were endless and it was all I could focus on. When I found the-one-in-a million comment that someone posted, I clung to it as my reality.”
Mikaela Markham from Ridgefield, CT was suffering from an irregular heart rate and severe stomach pain when she started seeking a diagnosis. Because it took weeks to get appointments with various specialists, she Googled her symptoms out of desperation to see what she could do to ease her pain, sometimes spending 7 hours a day online. “I’d be at school and my stomach would hurt, so I’d look up fast things I could do to feel better because I was in so much pain,” she says. “Doctors didn’t really give me information about exercise and what I could eat to feel better. It made me think about the bigger picture — why do we have to go online and do all this research when our doctors should be the ones to figure it out?”
Like so many people, Skrzyniarz and Markham fell down a self-diagnosis rabbit hole. With our medical histories accessible in a click, as well as a bevy of scientific studies, health sites and chat rooms, it’s really hard not to go online to get health information.
“It’s the norm to go online for health information. The way the U.S. healthcare system is structured, it kind of drives people to look for self-diagnosis, specifically with high deductible health plans,” explains Ateev Mehrotra, MD, Associate Professor of Health Care Policy and Associate Professor of Medicine at Harvard Medical School and Hospitalist at Beth Israel Deaconess Medical Center in Boston, MA. “As more people have to pay for health care out of their own pockets, patients are scared of the bill and now are thinking three times before they go to the doctor. One of the great things we’ve developed in the healthcare system is choice. For sinusitis, for example, you can go to your doctor’s office, or an urgent care, or a tele-visit and get the care you need. By researching, you can potentially help your physician figure out what’s wrong with you, and the optimal treatment plan. For people who have serious, chronic, health issues, it can also be an unbelievable way to build community and not feel so isolated,” he says.
He also acknowledges the anxiety online health research can bring on and the challenges it can present: “You could have a headache and go to chat rooms where people share stories about the headaches they have. The person who has a basic migraine or a tension headache, which accounts for 90-95 percent of people who have a headache, isn’t going to post online. The person with a thunderclap headache who found out they had a brain bleed or a malignancy is going to post about it and also describe how their physicians might have ignored their problem. There’s this epidemiologic program, where the people who go to the internet with headaches might hear only about the exceptions, leading to cybercondria.”
Jade Wu, clinical associate in the Department of Psychiatry and Behavioral Sciences at Duke University School of Medicine, and host of the Savvy Psychologist podcast, says the line between being an informed healthcare consumer and falling down the rabbit hole of self-diagnosis can easily get very blurry. “We’re all prone to something called ‘confirmation bias,’ a phenomenon where we unconsciously but selectively seek out information that confirms something we already believe. When you get a Google search of 20 results on a page, your eyes are automatically drawn to items that seem to be saying what you already suspect, and this feeds a cycle where the more you go down that self-diagnosis rabbit hole, the more convinced you are about a specific idea and shut out other possibilities,” she says. “This can, of course, increase your anxiety. Also, if your doctors are trying to provide answers that don't fit yours, you are less likely to trust them, making you feel frustrated, alone and hopeless.”
How to get the medical advice you need
So how can we search for health information online without sliding down a slippery slope of what-ifs?
1. Limit your research to credible sources
When beginning your online research, Mehotra advises considering the quality of the sites you’re visiting. “Medical sites, WebMD or Mayo Clinic will probably give you higher quality and better-balanced information than a chat board,” he says. Both experts recommend avoiding chat rooms (without a definite diagnosis). “Take notes with an open mind, and avoid drawing conclusions before consulting with a doctor,” says Wu.
2. Prepare questions to ask your doctor
“Doctors are humans and because we have had so many experiences of patients coming in with rock-solid ideas that were way out of left field — sometimes dangerously so — we can come across as impatient or dismissive towards patients' self-diagnoses,” Wu explains. “We shouldn't be! To avoid getting into a defensive back-and-forth with your doctor, I recommend presenting your thoughts in the form of questions. Instead of saying, ‘I read about my symptoms and I think it's X disease,’ try, ‘What can you tell me about X disease?’ Show that you're open-minded by asking for their opinion and use follow-up questions to get a sense of whether they seem to have understood your side of the story. When we're anxious, we just want to get a definitive answer. Medicine is often not so black-and-white. Instead of pressing your doctor for a ‘yes’ or ‘no’ right away, ask about next steps and resources you can use to learn more. You can always seek a second opinion,” Wu explains.
3. Don’t fixate on one outcome
Both Wu and Mehotra warn of confirmation bias. “Symptoms occur in the context of your personal and family health history, medications, social circumstances, and a whole constellation of factors that your doctors are trained to consider, versus only considering symptoms you perceive,” she says. If you feel dismissed or that your doctor is missing something important during your visit, you can always seek out a second opinion.
4. Stay busy
“Getting your thoughts too deep into one rabbit hole can actually slow down the discovery process,” Wu says. “I would recommend physically removing yourself from the computer and engaging in other activities that are engaging and fulfilling, like going for a walk, socializing, watching some interesting TV. The more mental space you can spend on fun and meaningful activities, the less mental space there is left to be drawn into the rabbit hole,” she says.
Today, Skrsyniarz realizes she may never know what caused her episode, but she meditates, does yoga and sees a therapist to try and cope with anxiety around a possible relapse. She also met with a wonderful neurologist who sat with her, answered every question and calmed her nerves. “He said, ‘You're a thinker and a doer, of course you are terrified because you don't have answers,’” she said. “He validated my feelings and that meant a lot.”