Over the past few years, self-diagnosis has become a hot topic. Social media platforms like TikTok have created new ways for people to learn about disabilities, chronic illnesses, and mental health conditions. With all this content about oft-stigmatized topics at our fingertips, some health professionals have shared concerns that more people are diagnosing themselves via online research.
If your health literacy alarm bells are going off, dear readers, you’re in good company. As health communicators, we know there’s a ton of misinformation on social media! And when people are overwhelmed or have limited context about a topic, they may take social content at face value (see also: health literacy is a state, not a trait). An inaccurate self-diagnosis could steer someone down the wrong path, leading them to seek care that doesn’t match their needs. Plus, people need a formal diagnosis to access some treatment options, accommodations, and other resources.
So, with all this misinformation online, it’s tempting to dismiss self-diagnosis. But while we don’t want to minimize the risks, we think it’s worth considering the reasons why people may self-diagnose. Because of bias in our health care system, it can be harder for many people to get accurate diagnoses, including people of color, women, transgender or nonbinary people, and people at a higher weight. Also, getting a diagnosis for tricky-to-identify conditions often means seeing multiple specialists, which can be complicated — and very expensive. And for many people, especially in rural areas, it can be hard to even find a specialist close to home.
For some people, self-diagnosis can be a stepping stone to a formal diagnosis. Others may choose not to pursue a diagnosis because having that “label” on their medical record could lead to discrimination. For example, some U.S. states have passed laws that restrict access to gender-affirming care for people with specific diagnoses. Until and unless medical discrimination becomes a thing of the past, self-diagnosis will continue to fill unmet needs. If we don’t acknowledge that reality, we risk alienating people who may already feel unheard.
So what’s a health communicator to do when self-diagnosis enters the conversation? We have some ideas:
- Meet people where they are. Acknowledge common barriers to diagnosis like bias in the health care system, long wait times, and expensive assessments.
- Stick to the facts. If you’re addressing misinformation, focus on sharing reliable info — and avoid commenting on people’s personal experiences.
- Share guidance to help people advocate for themselves at the doctor’s office.
- Explain the benefits and risks of pursuing a formal diagnosis so readers can make an informed decision based on their own situation.
- Suggest ways to make diagnosis more affordable, like sliding scale providers or organizations that provide funding for people seeking a diagnosis.
- Recommend specialists who have experience working with your audience, like doctors who specialize in diagnosing learning disabilities in adults, for example.
- Clarify who qualifies for services. If your organization provides services for people with specific health conditions, note if people need a formal diagnosis to qualify.
The bottom line: Self-diagnosis is a nuanced topic — but by addressing barriers to diagnosis and approaching the conversation with empathy, we can empower our audiences to make informed decisions that are right for them.
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