Cyberchondria: Could you have it?
Questions about our physical and mental health can crop up without any warning. Maybe you have developed a tickle in your throat or a pinkish rash suddenly shows up on your arm. In decades past, these questions would come and go. If any symptoms seemed serious enough, we’d get a professional checkup.
With online health advice sites, a diagnosis and its possible treatment are just a few mouse clicks away. Research shows that we’re all turning to online advice sources, though some more than others. Carrying your anxieties about your health into your Internet search behavior may be a symptom that you’ve got the increasingly common ailment you won’t find diagnosed there: Cyberchondria.
Alan Lampson MLS, a medical librarian and lead of the Frymoyer Community Health Resource Center helps us understand what cyberchondria is and isn’t.
What is cyberchondria?
Alan Lampson: Let’s start out first with a word that most people have heard of before, and that’s hypochondria. We define hypochondria as worry over an imagined illness with exaggeration of symptoms, no matter how insignificant, that last for at least six months and causes significant distress. It’s also called illness anxiety disorder.
People with hypochondria not only seek second or third opinions, but also insist on believing they have the disease even when told otherwise. As the name implies, anxiety disorder suggests it’s a form of anxiety. It tends to develop in the 20s or 30s, and it affects men and women equally. It sometimes comes on following the illness of a friend or family member.
Unfortunately, with the wealth of information, accurate or inaccurate, that’s available on the Internet, many hypochondriacs turned into cyberchondriacs. That’s a person who compulsively searches the Internet for information on real or imagined symptoms of illness.
Surveys show that about 90 percent of Americans report they’ve used the Internet for finding health information, including using symptom checkers. Cyberchondriacs are a subset of this large number.
What are the symptoms of cyberchondria?
One major sign is an excessive amount of time looking for information on the Internet. Some cyberchondriacs spend one to three hours a day online looking for health information. It becomes an obsession that takes a lot of their time and causes them great anxiety.
Cyberchondriacs are also dismissive of their healthcare provider. Cyberchondriacs don’t believe their doctor if the advice goes against the patient’s preconceived notion of illness. You’re looking for them to confirm what you’ve already decided. These types of patients change doctors a lot. They go doctor hopping. That’s another sign that maybe someone has a problem with cyberchondria. They keep going from one doctor to another, hoping to find one who will reassure that and confirm that they have the disease that they believe they have.
Also, cyberchondriacs often believe that they suffer from multiple diseases. It’s not just one disease, but it’s a number of different diseases and they may hear on the news about a disease that is either new or new in that area, and then they convince themselves after reading about it that it sounds like something they might have. The irony of it however, is that studies show that most cyberchondriacs and hypochondriacs actually are healthier than people who don’t have this illness anxiety.
And finally it might be difficult for a cyberchondriac to recognize it in themselves because they’re so wrapped up in the disorder. It’s much more likely that a friend, a family member, or a healthcare provider might notice these warning signs and speak to the person about it.
What are the negative impacts of cyberchondria?
Alan Lampson: There are several negative impacts. For instance, delaying going to the doctor. If the person thinks they have diagnosed what is wrong, they may defer going to the doctor or fear that the doctor will dismiss their fears. Once you’ve decided you have something, you don’t want to go to a doctor and have them tell you otherwise.
Also, not going to a medical professional out of fear for learning that you really do have something, so someone may be convinced that they have cancer and they put off going to the doctor because they’re afraid that it’s true and then it will be confirmed, and their worst fears will come true.
There’s an issue of self-treating. If someone comes to a diagnosis themselves without consulting with a doctor, it may cause them to stop taking a medication that they’re taking. It may cause them to seek out medications from other people who have the same condition. It may cause them to make a drastic change in their diet or their exercise routines. All things that shouldn’t be done without consulting your doctor first.
People may schedule unnecessary appointments with a specialist. If you self-diagnose yourself as having, let’s say, a torn meniscus, you might then immediately try to schedule an appointment with an orthopedist when really you should be checked out by your primary care physician first to see if you really need to see a specialist. We want people to utilize the correct level of resources that they need and not always be going to specialists.
And then also lastly, there’s the issue of the anxiety that people suffer for making a self-diagnosis. Many people will then become depressed if they’re convinced that they have a condition that they don’t really have and it can severely affect their life. Also, the fact that they spend so much time ruminating and searching for more information leads them into a downward spiral of anxiety and depression as they search more and more for answers.
How do you advise people search for health information online?
Alan Lampson: The Internet does have many excellent sources of reliable health information and there are appropriate uses for the Internet for patients. Most people have heard of websites such as Mayo Clinic and WebMD. They’re very commonly used. The only thing I would point out about them is that they’re both commercial websites and they have advertising on them.
What I suggest is a website from the federal government called MedlinePlus.org. It’s a free service provided by the National Library of Medicine. It’s free of advertising and specifically designed for consumers. They present the material in ways that anyone can understand, including in multiple languages.
Another other government website that has good information is the Center for Disease Control and Prevention.
And of course we at the Frymoyer Center always are available to assist people. Our number is 802-847-8821, or you can email us at resourcecenter [at] uvmhealth.org.
What is your opinion of interactive health tools and online quizzes?
Alan Lampson: One of the things you’ll find if you do one of those, is that you’ll get a result that lists 20 different illnesses you might have that cover a wide range of conditions. Some might be neurological conditions. Some might be cardiac conditions. It’s really difficult to be accurate.
And one study I saw compared using one of those symptom checkers to a physician diagnosing without a physical exam. They have the doctor the information you would give to a symptom checker. The doctor did not perform any hands-on exam. The doctors were right about two times as often as a symptom checkers were. Even the doctor’s level of accuracy without doing a physical exam or a patient history is pretty low because that’s an important part of the exam. The notion that a symptom checker could come up with an accurate diagnosis is pretty silly.
A doctor who’s diagnosing you takes a detailed family history, a detailed history of your medical conditions, does hands-on exams, observes, listens to you. They may even order tests, too.
What is your opinion on videos and YouTube as a source of information for patients?
Alan Lampson: It comes down to who’s producing it. You want to make sure that the source of it is reliable. Who produced it, how old is it? What’s the purpose behind the people who produced it? Is it to sell a product? Are they selling some cure for diabetes or is it something produced by the American Dietetic Association, the American Diabetes Association, or American Family Physicians? Is it someone who’s genuinely providing an educational service of the public or is it somebody who’s trying to sell something to the public?
What steps should a person take if they suspect a health or medical issue?
Alan Lampson: Go to your doctor. If you’ve read up a little bit about it, it may make it easier for them to explain what’s going on. Any research someone can do after a diagnosis puts them that much further ahead when they meet with a specialist. They start asking intelligent questions about it. It helps the patient get up to speed a little bit more.
After an initial diagnosis, many people are in a state of stunned shock. They don’t have the time at that appointment to sit down and come up with questions. As soon as they get home and they start talking to family members or friends the questions start building up. Write down a list of questions for your doctor before you meet with him or her.