The Risks of Using the Internet to Self-Diagnose

More people turn to the Internet for health information than you might expect. Several studies suggest that as many as 81.5% of adults in the United States search the Internet whenever they have concerns about their health. While some use the information to direct them to the appropriate care, others use it to self-diagnose and self-treat.

The problem with this is that the quality of online resources varies dramatically. Even Wikipedia, the world's largest and most-read reference source, is frequently cited for inaccuracies in its health content. Some online sources, especially those on social media, can be outright misleading.

On top of this, it can be difficult to impossible for even a skilled clinician to diagnose many medical conditions based on symptoms alone. If a condition is serious, the consequence of misdiagnosis can be severe.

This article described the hazards of self-diagnosis and self-treatment from the Internet. It also offers tips on how to find reliable websites for general health and medical information.

What Are the Risks of Self-Diagnosing?

There is a lot of medical information online, some of it credible and some of it not. Even if a website is accurate, it is easy for someone without medical training to misinterpret it.

Using online information to self-diagnose poses numerous concerns, not least of which includes:

• Becoming overly certain: Based on your understanding of what you've read, you may become convinced that you have a certain condition and turn a deaf ear to other possible explanations.
• Needless scares: It's easy to latch on to the worst-case scenario whenever you have symptoms that worry you. This can lead to undue distress.
• Unnecessary tests: If you become fixated on a diagnosis that you made via the Internet, you may insist on tests that you don't need, wasting time and money.
• Unreliable sources: Just because a website looks reliable doesn't mean it is. This can lead you to draw the wrong conclusions,
• Confirmation bias: This happens when people are drawn to websites that confirm what they already think, such as believing that they are dying or can be cured with suspect treatments.
• Dangerous treatments: Treating a presumed condition with supplements, herbal remedies, or other alternative medication can lead to side effects, interactions, and unforeseen toxicities.

Who Searches for Health Information?

Research suggests that people who turn to the Internet for health information tend to be more affluent and educated. This is due in part to greater access to digital tools and high-speed internet.

According to research published by the Centers for Disease Control and Prevention, people in the United States who utilize the Internet the most for health information include:

• By age: Adults aged 30 to 44 (67.2%), followed closely by adults aged 18 to29 (62.7%)
• By race/ethnicity: White (63.4%) followed by Asian (60.1%), Black (49.0%), and Hispanic (46.2%)
• By gender: Women (63.3%), followed by men (53.5%) 

According to the non-profit Pew Research Center, high-frequency internet health seekers also vary by income, education, and certain health factors:

• By income: Annual household incomes of $75,000 or more (95%) versus annual household incomes of $30,000 or less (57%)
• By education: College degree (89%) versus high school degree (70%) or less than high school degree (38%)
• By chronic medical condition: No chronic conditions (81%) versus one or more chronic conditions (67%)
• By serious illness: Experienced recent medical emergency (85%) versus no recent medical emergency (77%)

How Many People Self-Diagnose Mental Illness?

People not only use the Internet to research physical illnesses but mental illnesses as well. And, in some instances, learning about the symptoms of a mental condition (like bipolar disorder) has led them to seek a diagnosis and treatment. This is especially true among younger people ages 15 to 35.

Others, however, recognize certain mental health symptoms and diagnose themselves without seeking treatment. The problem with this is that you are more likely to get it wrong than right.

According to a 2023 study from Indiana University involving 2,237 college students, those who self-diagnosed themselves with depression, social anxiety disorder, agoraphobia, panic disorder, and general anxiety disorder were five to 11 times more likely to get it wrong than right.

Among those who recognize their symptoms, there are many reasons why they do not seek treatment. According to a 2020 study published in Cureus, people with depression are 42% more likely to search online for mental health information than see a provider. Their reluctance is primarily due to the stigma surrounding mental illness in any form.

Self-Diagnosis vs. Munchausen Syndrome

Self-diagnosis of a disease, even if incorrect, is not the same thing as Munchausen syndrome. Munchausen syndrome, also known as factitious disorder imposed on self (FDIS), is a mental illness in which a person will deliberately manufacture, falsify, or exaggerate symptoms of an illness that does not exist.

FDIS is thought to be related to a personality disorder known as borderline personality disorder (BPD) which impacts a person's ability to manage their emotions and can result in impulsive actions and issues with self-image. While fully aware of their actions, a person with FDIS seems unable to control their actions and may go so far as to hurt themselves in order to "evidence" their claims and gain the attention they crave.

FDIS is also not the same thing as hypochondria, a condition otherwise known as illness anxiety disorder (IAD). This occurs when a person has excessive fear about getting a major illness and will often convince themselves that an otherwise minor symptom is a sign of something severe.

IAD can lead someone to self-diagnose on the Internet (doing so is typical of people with IAD). On the other hand, FDIS is characterized by false claims in which the Internet may be used to manufacture symptoms.

When used to manufacture a false illness for someone else (typically a child or an elderly person in one's care), the condition is popularly referred to as Munchausen syndrome by proxy.

The Connection Between Teens, Social Media, and Self-Diagnosis

As powerful a tool as social media can be, it inherently poses risks to those seeking health information. The main concern is that social media users are weaned on getting information in snippets, which is never a good place to start when researching health information.

Reliable consumer health sites aim to be concise but don't "cut to the chase" and skip over vital pieces of information. Sites like Instagram, TikTok, and X are founded on cutting to the chase.

Because adolescents and teens are at an impressionable age, they can fall prey to misinformation from individuals who post things like "top 10 lists" of diseases trending among youth. The most common of these is ADHD (attention-deficit/hyperactivity disorder).

According to a 2022 study in the Canadian Journal of Psychiatry, of the top 100 most popular videos about ADHD uploaded on TikTok, 52% were classified as misleading, while only 21% were considered useful.

Of the 27% categorized as personal experience, the accuracy of information fell well below those posted by healthcare professionals. Even so, personal accounts tended to be the most watched by TikTok viewers.

Similar misinformation about autism, anxiety, depression, and bipolar disorder is widely disseminated on social media.

How to Use Online Information Responsibly

Using health information online can be a positive thing. One study says online health information "is becoming an increasingly important component of health and disease management."

Online health information is best used to:

• Learn more about your diagnosis than your provider has time to teach you
• Point you toward treatments you may want to discuss with your provider
• Find support from other people with the same chronic condition

You may find a lot of information online that you want to discuss with your provider. Presenting them with a huge packet of information at your appointment is unlikely to be helpful, though.

Instead, try to summarize it so you can cover the information in the small amount of time you're allotted during appointments. Also, ask your provider whether you can exchange information between appointments via an online patient portal.

How to Choose Reputable Websites

Among the most important things to keep in mind is that you should only look for health information on reputable websites. A little knowledge can help you weed out the ones that are best avoided.

When possible, go to websites from:

• Government agencies, such as the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and the Food and Drug Administration (FDA)
• Respected medical centers, university medical schools, and medical organizations such as the American College of Rheumatology
• Respected advocacy organizations such as the American Heart Association

Large health-related websites can offer a wealth of information, but they're not all created equal. Some things to look for include:

• Check the bottom of the page for a red and blue HON Code badge. That's a certification from the Health on the Net Foundation, which requires that sites meet certain quality requirements.
• Look for citations throughout the article and/or reference lists at the bottom of the article. If the site doesn't tell you where the information came from, be skeptical.
• Look for publication or update dates at the top or bottom of the article so you know you're getting current information.

Some online information is too general, while some sites get bogged down in medical jargon. Try to find those that explain medical terminology and make the information easy to understand.

Summary

Most people today look for health information online. However, when the Internet is used for self-diagnosis and self-treatment, it can expose people to inaccurate information and treatments that may not only be ineffective but potentially harmful.

When searching the Internet for health information, only use reliable websites from government agencies, reputable medical centers, universities, professional organizations, and advocacy groups. On large consumer health sites, look for HON Code certification which ensures quality standards.