Patient Self-Diagnosis: Physician Engagement Tools to Compete With TikTok

Simply finding an explanation can be cathartic, and it can create access to communities that provide normalization, support, and validation.

—Jessica A. Jaramillo (1)

Researching health information on the Internet has become a widespread practice by the public (2)—so much so that the Internet is anecdotally referred to as “Dr. Google” (3). For example, during the COVID-19 pandemic, when many professional services were scarce, people turned to online resources for information. Between 2019 and 2021, overall entertainment screen use for preteens (ages 8–12) increased from 4 hours and 44 minutes to 5 hours and 33 minutes (an average increase of 49 minutes daily). For teens, total screen media usage increased from 7 hours and 22 minutes to 8 hours and 39 minutes (an increase of 1 hour and 17 minutes daily). Likewise, during the height of the COVID-19 pandemic, social media posts that mentioned mental health soared by 80.5% from influencers across social platforms (4). Social media helped isolated individuals find support, information, and reassurance that others were going through similar difficulties (5). As more mental health videos and chats became available through social media and online symptom checklists, many adults and youths accessed these sites. With the highly personalized algorithms of Google and social media platforms, users are connected with content that matches their interests on the basis of prior “hits.” Thus, the consumer receives more information regarding the issues they accessed previously. This can create an “echo chamber” in which the viewer is repeatedly exposed to content that is related to their perceived mental health concerns (6).

Some mental health information on the Internet is reliable, but many of the online symptom checkers and social media platforms provide misleading information. A study by Plushcare (7) reported that 83.7% of mental health advice on TikTok is misleading, and 14.2% of videos include content that could be potentially damaging. Of the mental health conditions studied, attention-deficit hyperactivity disorder (ADHD) videos were found to contain the greatest amount of misleading content. Other disorders with highly misleading mental health content included bipolar disorder (94.1% of videos) and depression (90.3% of videos). Only 9.0% of TikTok users on the platform had relevant mental health–related qualifications. Although creating content regarding mental health can help to reduce stigma and prejudices, it also sets the stage for self-diagnosis and may prevent an individual from seeking needed professional consultation. These results suggest that social media users may trust peer-to-peer recommendations as a reliable source of mental health advice to the exclusion of professional information. As youths tend to frequent social media sites, this group is more susceptible to sharing and consuming misleading information. The generation of algorithm-induced confirmation bias (8), in which the information the user receives through the social media algorithm is that which corroborates the individual’s perspective, ignores the potentially beneficial information that contradicts it. It is this repeat exposure that is a key driver of belief in misinformation (9).

Clinical Vignette

Dr. Khan sat with Jessica and her mother on their first visit to his office for a psychiatric evaluation. Both leaned forward in their seats, anxious to give their points of view regarding Jessica’s symptoms. Jessica was 14 years of age, in the 9th grade, and lived with her single mother and their cat.

“Welcome,” said Dr. Khan warmly. “In my assessments, I like to hear from both parent and youth about what your concerns are and how I can be most helpful. Then I typically meet with you, Jessica, to understand your experience—and then your mother to get more of your developmental history and get her input. Does that sound OK?”

Ms. Smith, Jessica’s mother, started the narrative first.

“Doctor, Jessica keeps diagnosing herself with whatever she sees on social media. First it was ADHD and now it is bipolar disorder. I try to reassure her that this is just a stage—you know how moody teenagers can be. But she won’t listen to reason. And now I think she is meeting more kids on TikTok than she has in real life. Are they brainwashing her?”

“Mom,” Jessica interjected determinedly, “I’m not being brainwashed. You are just afraid to admit that there may be something wrong with your kid. I showed you all the diagnostic criteria and they fit me. I don’t know why you can’t just accept me for who I am! Doctor—please talk with her and make her understand.”

Dr. Khan nodded attentively while both spoke. “So, it sounds like you are both looking for diagnostic clarity.”

“Doctor, I know what I have,” Jessica blurted. “My mom brought me here to try to convince you that there is nothing wrong and that I should keep my problems to myself.”

“That’s not true!” Ms. Smith insisted. “We are here to get the right diagnosis by a trained professional—not your TikTok crew.”

With the brief pause in the argument, Dr. Khan spoke. “It seems this issue has caused real tension between you. I will do my best to be unbiased and go with my best clinical judgment. But sometimes the diagnosis is not the most important thing. People are unique and a diagnosis doesn’t address who you are, as a unique person, and what you need to thrive. So, understanding you, not just a diagnostic label, is what I focus on.”

Although neither Jessica nor her mother seemed entirely satisfied with this explanation, both nodded.

“So, shall I meet with you first?” Jessica inquired.

Dr. Khan met with Jessica. Jessica described her history of struggles with rapid mood swings—silly one moment and irritable the next. “My friends first noticed it in 7th grade. They are a lot like me. We all lose things, get hyper, and get in trouble for talking in class. So, it was a no-brainer that we all have ADHD. When I got all hyper and silly we laughed and they said—‘Jessica, you are so ADHD.’ Well, we always said that about each other. My mom didn’t believe it. When she took me to the pediatrician, my mom had gotten to her ahead of the appointment and convinced her there was nothing wrong with me. And that was the end of that.”

“And the bipolar diagnosis?” Dr. Khan inquired.

“Ok—so don’t judge me,” Jessica began. “You know how there are surveys online to help you learn about your diagnosis? Well, I fit the ultra-maximal cycling bipolar II diagnosis perfectly. I get all hyper and happy one hour and all moody and depressed the next. It’s like my mood is a roller-coaster. And online I learned so much more from other kids with the same thing. They understand me and what I am going through. We support each other,” Jessica finished.

“What social media are you using to connect with others with similar symptoms?” Dr. Khan inquired.

“Well, it could be any of them. TikTok, YouTube. I even saw the diagnosis in Psychiatric Times (10). So not just TikTok, like my mom says,” Jessica finished confidently.

Dr. Khan’s interview with Ms. Smith provided a different narrative. Jessica was reported to be a normally developing and friendly child who always “did OK” in school, although she was described by her teachers as “too talkative and social” in class. She used to play soccer and invite friends over to the house.

“COVID changed all that,” Ms. Smith explained. “Jessica became ‘obsessed’ with social media—scrolling and posting all the time. Last year she was sure she had ADHD, but her pediatrician said no. She didn’t even believe her pediatrician. Now it’s bipolar, and she is spending more and more time online with her new ‘bipolar crew.’ I think that she is just trying to get attention and to fit in. She just keeps trying to convince me that she really has bipolar disorder. I’m worried,” Ms. Smith said anxiously.

Dr. Khan completed the initial visit with a plan to move forward. He had Ms. Smith and Jessica sign informed consents so that he could talk to the pediatrician and school counselor with whom Jessica was close. Jessica and her mother were asked to complete initial rating scales for a wide range of symptoms, not just ADHD and bipolar disorder. Jessica said she would show Dr. Khan her TikTok feed next time so he could see for himself. They set an appointment for the next week to continue the assessment.

After they left, Dr. Khan mused to himself. He noted that online searches have often correctly identified symptoms of concern that prompted individuals to seek his professional help. But now there was a new self-diagnosis trend. Dr. Khan had seen three patients in the past few months who had self-diagnosed by using social media and were absolutely convinced that they had the disorder—one with ADHD, another autism spectrum disorder, and now bipolar disorder. He would review the literature to determine how common this was and how other clinicians effectively worked with patients who had a fixed notion of a diagnosis that now defines them, as well as with families who were at a loss as to what to do.

Discussion

Mental health professionals are increasingly reporting patients who present with self-diagnoses on the basis of Internet searches and social media content, such as YouTube and TikTok. Often these patients are teens and young adults, but even older patients have presented with absolute certainty that they have discovered the diagnosis that explains them. The open discussions on social media provide them with relatable content, which fosters a sense of belonging and reduces the feeling of isolation. They may join chats or other groups to compare their life stories and receive and provide support (11, 12). Individuals who do not have access to mental health services are understandably more likely to use the Internet as their only source of health information, which may facilitate help seeking. Others are drawn to social media sites to investigate and make sense of their symptoms (13, 14).

Researchers have hypothesized that the developmental stage of identity formation, autonomy development, and self-discovery makes teens particularly susceptible to suggestion and influence by social media content. For example, some TikTok users began to demonstrate tic-like behaviors after a social media influencer posted a video of wild, tic-like movements that went viral (15, 16). It has become trendy in some circles to identify with a mental health condition and find other like-minded individuals. In this TikTok subculture, there are many videos of youths who have gone to great lengths to demonstrate their disorder and remain in a sick role. Individuals who self-diagnose present with a variety of symptoms and motivations. A clinician must provide empathy, validation of the patient’s distress (not necessarily the diagnosis), and an attitude of curiosity in order to understand the patient’s need to self-diagnose. For those individuals, the disorder may be considered a personality trait, style, or uniqueness to embrace, rather than symptoms that are distressing and a quest for relief (12, 17–19).

Lest we overly pathologize teen self-diagnosis, it is important to remember that self-diagnosis is not new and is not relegated to young people or those without health literacy. Self-diagnosis accompanied by anxiety and preoccupation is the essence of “medical student syndrome,” the not-uncommon condition in which medical students and residents develop the symptoms of the disease they are studying, and falsely attribute their symptoms to that disease (20, 21). What is different in the digital age is the ease, accessibility, and feedback loops of Internet searches and social media. “Cyberchondria” is a recently coined term that describes excessive online health searches that are compulsive and may serve the purpose of seeking reassurance but lead to a worsening of anxiety and distress. For these individuals, standard medical assessments do not suffice because they seek excessive diagnostic testing to rule out the feared disorder (22, 23).

Patients who present with self-diagnoses may be parceled into three primary groups: 1) an individual who is experiencing symptoms and searches online to facilitate diagnosis and determine whether they need to seek professional help; 2) an individual with ego-dystonic self-diagnoses, who is so anxious and obsessed about being ill that the standard medical work-up cannot alleviate their fears (cyberchondria); and 3) an individual who has symptoms that partly fit a known disorder, and who then begins to identify with and find solace in an online community that shares the same disorder—thus holding onto the self-diagnosis as part of their identity and group belonging.

Clinicians must parse out the function that self-diagnosis serves for each patient. It is important to set realistic expectations—what they may expect from the process and conclusion of the assessment. Does the patient have preconceived notions and hope for a magic fix or validation of their self-diagnosis? The clinician validates the patient’s concerns (not necessarily the diagnosis), assists with self-understanding, completes a thorough psychiatric assessment, and provides individualized treatment options through the lens of patient-centered care.

A patient who has self-diagnosed and has incorporated this mental health condition as critical to their self- and community identity (ego-syntonic) may or may not have accurately diagnosed their symptoms. Online screeners and social media symptom comparisons may lead the patient to a correct self-diagnosis, although this is rarely followed up with recommendations for medically indicated services. The clinician must practice a fine balancing act when connecting social media use to the presenting symptoms. The patient may suspect that the clinician is implying that they are manufacturing symptoms—that the symptoms are fake in order to garner online attention. This may validate an often-voiced concern on social media platforms that families and professionals do not understand them and do not consider the validity of their self-assessments—further reinforcing the notion that the online community is more trustworthy.

Tips for Enhancing Engagement With a Patient Who Presents With Ego-Syntonic Self-Diagnosis

The following are tips for enhancing engagement with a patient who presents with ego-syntonic self-diagnosis (6, 12, 24).

1. Provide empathy and validation: Recognize the opinions and emotions surrounding the patient’s presenting concerns (as well as for caregivers, if the patient is a youth).

2. Clarify the process and product of the assessment: Emphasize an understanding of the individual and provide recommendations, not simply a diagnosis. This is especially needed for caregivers who want to prove that the patient’s self-diagnosis is “wrong” and the patient who seeks to prove that their self-diagnosis is “correct.”

3. Complexity of mental health: Highlight that mental health issues are frequently complex, nuanced, that similar diagnostic symptoms are often seen in multiple disorders, and each person is unique in their experience, which cannot be captured in a diagnostic list.

   1. Provide psychoeducation about mental health symptoms viewed online and how these may be misleading.

   2. Explain that even an accurate diagnosis must not define the individual.

4. Listen actively without judgment or directives: Use open-ended questions to inquire about the details of the patient’s symptoms and emotions to promote self-awareness and to avoid relying on potentially inaccurate online information.

5. Take a thorough history: Interview the patient (and caregivers separately, if the patient is a youth).

   1. Record developmental, social, educational, medical, family, psychiatric, symptom (onset, progression) history, and impact on daily functioning.

   2. Gain information from other sources (e.g., primary care physician, therapist, school).

6. Obtain a social media history: Inquire about their relationship with social media—how much time they spend on it, what they post, the types of content that they consume, with whom they interact, and how it makes them feel.

   1. Clinicians may ask patients to share accounts, videos, or posts that have been influential for them, or to share their own posts, if they are comfortable in doing so.

   2. Inquire as to whether the patient has shared their symptoms online and what the response has been (supportive, mocking). How did they feel?

7. Accessing the patient’s online presence: The clinician should not search for patient information through the Internet or social media without clear and crucial clinical relevance, such as safety. Information obtained through this route should be shared directly with the patient in order to maximize transparency and before recording any such information in the patient’s chart (25).

8. Formulate the case: Review the biopsychosocial aspects and postulates regarding the function of the self-diagnosis for the patient. Choose wording carefully and avoid invalidating concerns.

9. Feedback: Provide ample time for review, discussion, and recommendations.

   1. Provide feedback that includes strength and resilient factors as well as areas of concern.

   2. Provide the formulation in an age-appropriate manner.

   3. Provide validation of patient (and parents, if the patient is a youth) concerns, which are well-founded no matter what diagnosis is given.

   4. Discuss the diagnosis. If the patient does not meet criteria for their self-diagnosis, discuss the traits they reported that may have led them to conclude that and intervene to support the patient, if needed.

10. Recommendations

    1. Discuss other aspects of life that can help to provide group support: a community group, school activities, cultural group, religious group, arts or theater group, sports team, volunteerism, and/or lessons that are appealing and would provide some of the supports that the patient was getting from online platforms.

    2. Suggest media-free times for the entire family (e.g., mealtimes, outings, before going to bed).

    3. Suggest that parents talk to their child regularly about their life and what they are viewing on social media. For youths with excessive social media consumption, recommend that caregivers co-view content occasionally to understand the social media world of the child. Parental protections should be applied as appropriate for age.

    4. Recommend teaching responsible media consumption and posting to the patient—checking on sources of information, not posting or reposting any negative or inappropriate content.

    5. Recommend appropriate psychotherapy as indicated. In families with conflict regarding social media use or patient privileges, family therapy sessions may be helpful.

    6. Assist in accessing appropriate resources.

    7. Consider whether follow-up psychiatric care is indicated.