Should you resist the urge to search what ails you? Can you trust what you read?
When my son was 18 months, our pediatrician suggested that we get his hearing, speech and cognition tested, primarily because he was still non-verbal at this age, and not very interested in communicating at all.
The doctors agreed he had Verbal Apraxia, a speech disorder not unlike what sometimes happens with a stroke victim who has to relearn to talk: The wiring in his brain that told his mouth to speak a word was faulty, so he could say nothing, even though he understood a word and wanted to say it.
I had long-since withdrawn from Mommy & Me classes, because while the other kids were doing their “normal” things (running up to their moms, showing them things, pointing and labelling, speaking their one and two-word sentences), my son would drift over to the window, grab the chain on the blinds, and fixate on it for the entire class. He didn’t speak, and he didn’t want to share anything with me. I was so lonely in those classes, and so self-conscious, I often fought back tears. Playdates were just as difficult: The other mothers would notice that something wasn’t quite right, and would either begin diagnosing him, or be overly comforting, both of which were equally excruciating.
Now, the terrible fear and anxiety I was harboring suddenly had a name: There was something real (and fixable?) preventing us from communicating with each other. The night after we met with the doctors, my brain was spinning and there were still so many things I didn’t understand about the diagnosis. So I did what most of you would do: I went online to learn more.
What I found was a sea of support groups, sharing fears as if they were facts. Arguing about the best course of action. Mistakenly lumping symptoms of other disorders with this one, shaming each other, fighting with each other. If I was to believe these sites, my son’s future was dire and included all kinds of hardships beyond what my doctors had told me: That this was treatable and that he would likely be communicating “normally” by the time he went to Kindergarten. My husband found me in a heap by the computer, sobbing, and made me promise not to read any of those sites again.
I’m on the other side of this now, with some distance to appreciate it all. After two solid years of speech therapy, he was speaking beautifully at 4 1/2 years old, and after 10 more years of watching him grow into the teenager he is now, I can say that he’s a happy, talkative kid, a brilliant public speaker, has the quickest wit of anyone I know, and does a mean Australian accent.
As I learned more about Verbal Apraxia through the years, I discovered that many of those bleak stories I had read on those websites were just straight-up mis-information, disseminated by well-intentioned and equally-scared parents. They had kids who likely had other problems beyond our diagnosis, or the disorder was just manifesting in a different way than my son’s was. Either way, the information they were sharing was damaging.
Does this mean that you should never do a medical search online? It doesn’t. I still do them for things here and there, and I can see how the right search at the right time could be lifesaving. It just means that you have to take what you read with a grain of salt, and always, always, consult with your doctor who knows you.
Support forums online brim with falsehoods, and special-interest websites masquerade as impartial, so you just need to ensure that you’re looking at a site that is authoritative and doesn’t have an agenda. Here are a few to check out.
The government officials
These are government run websites you can use to check your symptoms online. I’ll let you decide if that means you can consider them truly objective, but at least you don’t have to wonder if they’re advertising-driven. Everything there has been written or reviewed by medical experts.
Healthfinder: The U.S. government’s self-help website is focused on prevention, and offers a basic library of information on avoiding the most common major illnesses. Although the site is trustworthy, it’s also fairly limited: health conditions covered include only cancer, diabetes, obesity, heart health and STDs. However, it’s well-vetted by professionals and includes news on up-to-date health studies—something that can be hard to trust when it’s found elsewhere.
Center for Disease Control (CDC): The CDC’s site is a deep source of health information, starting with a hot list of health topics (for the casual seeker) and funneling into a rabbit hole of articles and studies that can be accessed through the search function. Studies are dense and will be too technical for many, but the eager fact-seeker will find lots to satisfy their curiosity.
World Health Organization (WHO): The UN health organization’s site has articles, videos, general and technical information on diseases and illnesses around the world. Facts on everything from SARS to ebola, cancer and even asthma are here. But beware: you might begin by looking for information on Lyme disease and find yourself worriedly poring over the details of arsenic poisoning…just because the report is so easily accessible.
MedlinePlus: The National Institute of Health’s online library offers extensive, easily searchable information on thousands of conditions, and most of it is written in an easy-to-understand way. it also includes links to organizations that specialize in various ailments, and is especially good if you have a certain illness in mind that you’d like to learn more about.
The health brands
Think of these sites as well-informed magazines: they’re for-profit and they accept ads, but their editorial is strong: it’s written by journalists and researchers, and overseen by medical professionals.
WebMD: A team of four MDs and a long list of editors are behind WebMD. The symptom-checker makes it simple to plug in what’s wrong and see potential diagnoses, but it also makes it easy to come up with a potentially scary result based on a simple concern such as “swelling.” Also, symptoms may not come up unless you describe them the way the checker has them indexed (for instance, “leg weakness” won’t work, but “difficulty getting up from a chair” will). The general search function from the home page will generate many more results.
Medscape: Created by and for MDs, this site offers health news and treatment recommendations for a wide range of conditions. Reading doctors’ reports offers a different, “insider” angle on many ailments, and can give you conversation points to share with your own doctor.
Mayo Clinic: This one is actually not-for-profit, but the famous hospital’s website does feature ads that help to support it. The symptom checker offers a limited range of symptoms, while the search function can access thousands of in-depth articles and studies.
The digital doctors
While you can’t fully replace in-person exams yet (at least not without sophisticated robots), you can receive virtual house calls via online video services. This is the next best thing to being in a doctor’s office… and often more affordable.
HealthTap: For a fee ($99/month for unlimited access), you can access more than 60,000 doctors for in-person video consultations; HelpTap promises that they’ll answer within two minutes of your call, 24 hours a day. However, the doctors aren’t a replacement for actual medical care; they’re more of a personalized replacement for a Google search. As the site specifies, “Interactions on HealthTap do not constitute the practice of medicine and consultations cannot be used for providing a formal medical diagnosis, for a physical examination, for obtaining prescriptions, or for treatment.”
LiveHealth: When you’re feeing crummy and the weather is blustery, the last thing you want is to trek out to the doctor’s office. This site offers actual 24-hour doctor appointments with physicians who can both diagnose and prescribe—many hospitals are starting to work with LiveHealth, including UCLA and Anthem Blue Cross and Blue Shield. A single visit costs $49, and if you have a health plan already, you could pay less through your coverage. Appointments generally last ten minutes.
How I do it
To me, there’s no substitution for a one-on-one with a medical professional who knows you, and who you trust. I am truly grateful to have had access to the amazing medical resources I’ve had in my life, many of whom are tops in their field, but more importantly, all of whom I love as people and trust as doctors. If you don’t have a team like this in your life, find them. There are so many fads in medicine, and so many writers and researchers looking for a different angle, a different story. That doesn’t meant that what they write is going to be the truth, or apply to you at all. The people who know you and your history are in the best position to give you accurate information when it counts. My diagnosis? Check your symptoms online when it’s small stuff, and always get a real doctor’s perspective.
Many of you might have had a different experience checking symptoms online. Share it with me here: Let’s talk!