Why Self-Diagnosis Is Dangerous (and What To Do Instead)

With so much information available online these days, the impulse to be your own doctor is understandable. But that doesn’t make self-diagnosis safe. Trying to identify or treat a medical condition on your own can have serious consequences.

What is self-diagnosis?

Self-diagnosis is when you draw your own conclusions about your symptoms, instead of seeing a healthcare professional. These judgements are often based on internet searches, social media, online tests, articles, books or past experience.

“When you self-diagnose, the feelings driving your conclusions are very valid,” says psychologist Amanda Rose, PsyD. “But the diagnosis isn’t. Not until it’s discussed and confirmed by a trained professional.”

The dangers of self-diagnosis

Self-diagnosis has exploded in recent years because we have access to so much information online.

“During the early days of COVID-19, more of us used social media to diagnose ourselves,” Dr. Rose notes. “Social media seemed to reduce feelings of isolation. It also normalized and validated our experiences.”

Social media influencer-created content is often short, digestible and even fun. But not all of it is credible. Plus, the more you engage with health-related content, the more of it you’ll see, creating an echo chamber that may or may not be accurate.

Now, add the growth of healthcare e-commerce to the mix. It’s easier than ever to run tests, order drugs and purchase equipment without a provider’s guidance. It’s also harder to guarantee accurate results or know if the products you’re buying are safe to use.

Here’s why the self-diagnosis trend concerns Dr. Rose.

The diagnosis could be wrong

When a healthcare provider examines you, they don’t just tick boxes. They collect evidence to build a working theory. Then, they test that theory in the safest way they can.

“When you diagnose yourself, you might lack the perspective or information needed. You may miss outside factors and situations that impact — or explain — your symptoms,” Dr. Rose says.

Here’s an example: Let’s say you’re always feeling tired and down. So, you decide that you probably have clinical depression. You may be right. But those symptoms can be associated with other conditions, too, from vitamin deficiencies to sleep disorders. Without a healthcare provider to ask the right questions and run the right tests, there’s no way to know which one you might be dealing with.

You lack the training

Providers are trained to differentiate between diagnoses. That means they often start with several ideas as to what’s causing your symptoms, then they narrow down the list by ordering tests or trying treatments. That process helps them come to an informed conclusion.

Let’s say you know you have issues with anxiety. Others may think so, too. You may conclude that you have generalized anxiety disorder. But is that right?

“Your thoughts could be spot on. But there are other diagnoses to consider,” Dr. Rose says. “Your symptoms could also be caused by a trauma-related disorder, a panic disorder or obsessive-compulsive disorder (OCD). Or maybe you’re anxious at work because you have undiagnosed ADHD. If it’s making it difficult to keep up, it could cause performance anxiety.”

Dr. Rose also notes that stress and anxiety are part of being human and aren’t always cause for concern. They become a problem when they impact your ability to function.

It can cause unnecessary stress

When you read up about diseases online, it doesn’t take long for anxiety to creep in. By 3 a.m., you’re sure you’ve got “mad cow disease” and smallpox!

“Being informed is crucial. But don’t get wrapped up in what you read online,” Dr. Rose urges. It will create unnecessary anxiety and stress.

The same goes for your medical records. It’s good to review your records. But Dr. Rose warns against reading too much into test results or clinical notes.

“These records aren’t written with you in mind,” she adds. “They use a lot of shorthand and technical terms that can make them easy to misinterpret.”

Instead of jumping to conclusions, ask your provider to walk you through your test results. And don’t be afraid to ask questions. Preparing them before your visit can help ensure that you hit on everything.

Online pharmacies aren’t always legitimate

Technology is making medicine easier to access. But it’s also making the health industry harder to regulate.

Some online pharmacies are the real deal. But there are also tens of thousands of illegal ones operating around the world. When your providers manage your treatment plan, medications come from sources that have to comply with national quality and safety standards.

Your treatment plan could be inappropriate

Treating medical conditions can be a multi-step process. And not following a methodical approach may do more harm than good.

Imagine this: Based on social media posts, you’ve convinced yourself you have ADHD. So, when you finally speak with a provider, you only share the information you believe is relevant. If you offered all the details, they would have diagnosed both ADHD and bipolar disorder (BPD).

Dr. Rose says that second diagnosis would likely change your treatment plan. That’s because some medications used for ADHD can trigger manic symptoms in people with BPD.

“A well-ordered treatment plan could save you unnecessary stress, unpleasant symptoms, time and money,” she states.

You might delay vital treatment

When you create your own diagnosis and treatment plan, you risk:

• Masking symptoms of a serious condition
• Delaying needed medical treatment

Here’s an example: If you work in construction, you might be used to aches and pains. So, when your lower back starts acting up, you take your brother’s prescription painkillers instead of seeing a doctor.

Unfortunately, that lower back pain was actually a symptom of a kidney infection. Taking those heavy-duty pain pills helped your symptoms in the short term, but they also allowed the infection to get worse.

You risk labeling normal behaviors as ‘abnormal’

Have you ever heard the phrase “If all you have is a hammer, everything looks like a nail”? You could say the same thing about some of these social media posts: They make everything look like a symptom.

“Finding out about ourselves is a normal and healthy thing to do, within reason,” Dr. Rose stresses. “We don't want to compare ourselves to others too much. And we shouldn’t label our unique personality traits, experiences and behaviors as ‘disordered’ unless it’s absolutely necessary.”

What to do instead of self-diagnose

How do you participate in your medical care safely?

• Visit your primary care provider. They’re often the first stop for physical and mental health concerns, unless you already have a specialist. Long wait time? Ask to be seen by another member of their clinical team.
• Come prepared. Symptom trackers, questions, the newest research on your condition: Bring it all! And alert your provider that you have topics to discuss at the start of the appointment.
• Be honest. If you don’t have a formal diagnosis, say so. Your experiences and concerns are still valid, but misrepresenting your medical history is dangerous. “As clinicians, we don’t know what we don’t know,” Dr. Rose notes. “Being honest helps your provider paint the clearest picture and come to the most accurate diagnosis and treatment plan.”
• Advocate for yourself. If your provider isn’t ordering a test you think you need, ask why. If you want to be referred to a specialist, say so. If you aren’t comfortable with the care you’re getting or feel your concerns are going unheard, get a second opinion.

Sometimes, the quest for a diagnosis can go on for years — especially for people living with rare and orphan diseases. If you aren’t getting the answers you need in the traditional way:

• Reach out to nonprofits and patient advocacy groups like the National Organization for Rare Disorders.
• Apply to have your medical records reviewed by an undiagnosed diseases program like the one established by the National Institute of Health (NIH).

Final thoughts

What’s one way you can tell that getting a firm diagnosis from a medical professional is important?

Your providers go to the doctor, too!

“Having the training gives us some unique insight,” Dr. Rose concedes. “But it’s no substitute for another professional’s objective evaluation and opinion.”

You’re a valuable member of your healthcare team. So, bring your insight, experiences and an open mind to your appointment. Your input will inform your provider’s diagnostic process. But leave the conclusions to them.