Self-diagnosis in a digital world
March 28, 2022
By Lindsey Phillips
By Lindsey PhillipsMarch 28, 2022
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For better or worse, social media posts about mental health, paired with the ease of Googling one’s own symptoms, are enticing many people to self-diagnose. In fact, a 2021 Vox article, “How mental health became a social media minefield,” asserted that social media is becoming known as the “WebMD for mental health.”
Some clinicians appreciate the self-awareness that can result from social media postings and online searches about mental health, whereas others focus more on the potential harm that self-diagnosis can cause. Counselors need to be aware of the hazards of self-diagnosis, but many in the profession believe they can also use it to gain insights into the inner world of their clients.
Micheline Maalouf, a licensed mental health counselor and owner of Serein Counseling in Orlando, Florida, chooses to focus on what she can learn from a client’s self-diagnosis. In her practice, she has noticed more clients asking if they have a particular mental health disorder because of social media content. Recently, a client told her they thought they might have obsessive-compulsive disorder (OCD). When Maalouf asked why, the client explained, “I saw this TikTok video about signs that you may have OCD. I resonated with some of the symptoms but not all, so I’m not sure if I have it. My situation wasn’t exactly like the person’s in the video, but it got me thinking.”
Maalouf asked more questions about the symptoms from the video that had resonated with the client, and she also educated the client on the process of determining a diagnosis, emphasizing that it is not as simple as matching symptoms from a checklist. Disorders manifest differently for everyone, she told the client, and depend on many factors, including life experiences, gender, race and more. But Maalouf also reassured the client that their awareness about OCD symptoms was “important information … because it could be the first step in figuring out if something is actually going on.”
Maalouf, an American Counseling Association member who specializes in treating anxiety, depression and complex trauma, says she is thankful for conversations such as these for two reasons. First, it means the client has some self-awareness, which is a good thing, she says. And second, it provides her with more insight into her client and the potential issues they need to work on in session — regardless of whether the issues match the client’s self-diagnosis.
Searching for answers
People are hungry for mental health answers, observes Lindsay Fleming, a licensed professional counselor (LPC) with a private practice, Main Street Counseling Solutions, in Park Ridge, Illinois. They want to learn how a potential diagnosis or certain symptoms are affecting their lives and ways to better manage them. What’s hard, she says, is “when someone is doing that by themselves and doesn’t have a professional guiding them” and helping them understand it.
“A lot of people like to have that diagnosis because it explains [what’s happening],” says Tristan Collazo, a licensed resident in counseling at Wholehearted Counseling in Virginia Beach and Carrollton, Virginia. “Some people think it’s stigmatizing, but a lot of people find hope in it because it finally — for once in their life — explains what’s going on.”
Kaileen McMickle, an LPC and founder of Inner Ascent Counseling in Rice Lake, Wisconsin, often works with clients who are struggling with anxiety disorders. She finds the more anxiety a person has, the more likely they are to seek information about what they are experiencing. “It can be hard to feel so isolated and not know what’s going on,” she notes. “People just want certainty. And with Google and social media, it’s so easy to go [online] and try to make sense of what they are experiencing.”
McMickle specializes in treating anxiety, trauma and OCD, and she frequently sees self-diagnosis with clients who have OCD. They often wonder if what they are experiencing is “normal.”
“We all have intrusive thoughts. We all engage in safety behaviors in some way,” McMickle explains, “but OCD can feel a lot different … [and outside] the ‘normal’ range of behaviors,” such as feeling compelled to tap one’s car 10 times before going into a grocery store or spending two hours trying to find “just the right” products. “People want to know what’s happening to them; they want to know what they’re experiencing,” she says.
Collazo says that a couple of his clients initially self-diagnosed because they identified with a particular trait of a disorder. Someone may see a video about how controlling behavior and manipulation are traits of narcissistic personality disorder, for example, and fear that they have the disorder because they engaged in this type of behavior once in a past relationship. They might have been upset and accused their partner of not loving them, for instance. Making such a statement can be a form of manipulation used by someone with narcissistic personality disorder, Collazo notes, but he points out that it is also something many people who don’t have the disorder might blurt out in the heat of the moment.
It is human nature to sometimes relate to a disorder or disease after learning a little bit about it, Collazo says. “We probably all have traits from different personality disorders,” he observes, “but it takes certain criteria to have an official diagnosis, which people don’t often understand. They may have a trait or symptom [from a personality disorder] … but that does not mean they have that disorder.” In his social media posts, Collazo tries to debunk the tendency to self-diagnose based solely on resonating with a particular trait.
That is why it is so important to help clients distinguish between symptoms or traits and an official diagnosis, says Shani Tran, a licensed professional clinical counselor. If a person sees a post about how an inability to sleep, a lack of energy and feelings of sadness are symptoms of depression, they may assume they are depressed because they are struggling with one or more of those symptoms. But having trouble sleeping could be the result of an array of issues, Tran notes, and not necessarily evidence of a mood disorder.
Tran, owner and founder of The Shani Project, a group counseling practice in Minneapolis, attempts to personify anxiety, depression and trauma on her TikTok account as a means of educating others about mental health issues. She has noticed people resonating with some of her mental health “characters” by commenting, “Oh, that’s so me.”
In her online posts, Tran makes a point of saying, “these may be the signs of” rather than “these are the signs of” to underscore that just because someone resonates with a particular trait in one of her videos doesn’t mean that they necessarily have a diagnosable disorder.
For example, someone can experience a trauma and not have posttraumatic stress disorder (PTSD). It often depends on functionality. “Whenever a diagnosis is being made, there has to be an area of the person’s life” — social life, personal life, work or school — “that they aren’t functioning in for it to be a diagnosis,” Tran notes. Even if someone with a mental health issue is high functioning (meaning they function at a higher level than others with the same condition), thereby making it more challenging to determine a diagnosis, there is often a change in the severity or duration of symptoms from how they were functioning before to how they are handling things now, she adds.
Tran hopes her social media content will invite conversations about mental health and get people who relate to some of the symptoms she highlights to consider talking to a mental health professional. Her book Dope Therapy: A Radical Guide to Owning Your Therapy Journey, which she wrote to help people navigate therapy from start to finish, will be published this summer.
McMickle observes that “when people self-diagnose, they are looking for information about themselves, and that can be a really helpful, positive thing. That might mean they’re experiencing some discomfort or emotional dysregulation and they want to change that.” But given the potential for misinformation online, she also cautions counselors to ask clients where they are getting their knowledge of symptoms and disorders and to be careful about any resources — especially social media accounts — that they provide to clients.
Potential dangers
As counselors know, accurately diagnosing mental health conditions is complex, requiring years of education and training to truly understand the nuances. Social media, however, tends to simplify this process and often reduces psychological theories or disorders into brief snippets or common stereotypes. For example, a social media post might boil diagnosis down to “Signs you are with a narcissist” or “Things you didn’t realize were ADHD.” Or a meme may depict someone with “avoidant attachment” agonizing over their choice of either cutting someone out of their life or clinging to the person so the person won’t abandon them.
These types of posts don’t address the complexity of mental health issues or any new research on the topic, such as how attachment is a pattern and not a fixed state, says Ilyse Kennedy, an LPC and licensed marriage and family therapist. “So, people may think certain things about themselves or may resonate with something without having all the nuisance behind it of what that actually means,” she says. Kennedy notes that it has taken her years of studying attachment disorder and reading several books before understanding her own attachment style.
Some clients who self-diagnose come to counseling wanting to receive that same diagnosis from a professional, but people don’t necessarily think about how certain diagnoses could affect them long term, Tran says. For example, some diagnoses could alter the type of life insurance policy someone can get or hinder their ability to obtain security clearances for their job, she points out. Understanding the potential long-term implications makes her careful and cautious when diagnosing clients, she says.
Tran reframes clients’ attempts at self-diagnosis to emphasize their symptoms. If someone asserts that they have depression, for instance, because they are having trouble sleeping and don’t have much energy, she focuses on those symptoms, which could be because of depression or because of anxiety, PTSD or just daily stressors. “People come to therapy looking for answers, but [therapy] is actually very informational,” Tran says. She spends substantial time asking questions and gathering more information about clients: “Tell me more about this low energy. Is it when you wake up? Does it happen at social functions or when you are doing schoolwork?”
Another problem is that anyone, regardless of their qualifications (or lack thereof), can post what might be interpreted as “expert advice” on mental health issues online, which can lead to widespread misinformation. Even people who are well-intentioned can misread or misunderstand mental health information and portray it inaccurately online, causing others who are simply looking for answers to be misled, says Fleming, an ACA member who specializes in attention-deficit/hyperactivity disorder (ADHD).
Social media algorithms, which filter content based on people’s interactions, can also play a role in leading someone toward an incorrect self-diagnosis. The first thing people see when they open up TikTok is the platform’s feed of recommended videos, called the For You page. If someone resonates with a TikTok video about ADHD, for example, and they “like” it, then their For You page begins to show them more ADHD videos. This creates a type of self-fulfilling prophecy, Fleming says, because the person begins to feel that they are “meant” to see the videos.
According to Collazo, this misinformation has the potential to create a nocebo effect — someone develops certain negative or harmful side effects or symptoms because they believe or expect that they will occur. In other words, a social media post saying that people with these particular symptoms have a particular disorder could cause someone to feel that they do, in fact, have the disorder or cause them to engage in behaviors that confirm it.
Given the potential for error when it comes to self-diagnosis, McMickle explores what that particular self-diagnosis means to the client and how it affects the way they view themselves or approach certain situations. Learning about a diagnosis online has the potential to reduce the stigma around it and instill hope in the person that they too can get help, McMickle notes. But if they are self-diagnosing without also seeking professional assistance, or if they are misdiagnosing themselves, then they are potentially stuck in a difficult place and not getting the help they need, she says.
Potential benefits
On a positive front, social media can foster a sense of community and belonging for those who are looking for mental health answers. Discovering online videos and communities of other people who share similar symptoms and struggles, especially for stigmatizing diagnoses such as bipolar disorder, can be rewarding and encouraging, says Kennedy, founder of the group practice Moving Parts Psychotherapy in Austin, Texas.
People typically have a general idea about anxiety and depression, but Kennedy says social media has opened the door for more discussions about trauma and neurodivergence, including diagnoses such as autism and OCD that have often been highly stigmatized.
Kennedy, who specializes in trauma work and individuals with trauma related to dissociative disorders, recalls that when she was first making her professional website eight years ago, colleagues advised her against mentioning trauma because it was a “complex term” and people wouldn’t understand it. Fast-forward to today, and that advice seems ludicrous because there is so much more awareness around trauma.
One of the biggest benefits to the rise in self-diagnosis, at least when prospective clients follow up and seek professional help, is that it provides counselors with insight into the client’s inner world and how they perceive their experiences, Kennedy says. She notes that she has experienced more female clients resonating with social media content on ADHD lately in part because people are just beginning to highlight how the diagnosis can look different in women than in men. When clients tell Kennedy they think they have ADHD, she can use their self-diagnosis to help them reframe how they view their experiences. These clients can then consider their difficulty starting tasks through the lens of neurodivergence rather than as an inherent flaw within themselves.
“Self-diagnosing [online and through social media] can help people identify how they feel and what they’re struggling with,” Fleming says. “It can also be the only place people have access to mental health information.”
From her perspective, client self-diagnosis can provide more context, and the more information she has about the client, the more likely she will be able to help them. A self-diagnosis of ADHD, for instance, gives her the opportunity to ask about when and why the client feels distracted. Are they bored and having trouble focusing, or are they anxious about all they have to do later that day?
McMickle finds that with OCD, the more insight clients have, the better the outcomes. If they realize on their own that they might be experiencing compulsions, obsessions or intrusive thoughts that are interfering with their quality of life, then they may come to counseling more prepared to make changes to improve their situation, she says.
Online mental health searches can be a slippery slope, however, McMickle warns. People can find useful information about what they are experiencing, she says, but they can also “go down a giant rabbit hole with any disorder or any medical problem” and get lost in the possibilities of what is happening to them. There is a difference between being genuinely curious and wondering “Do I have this disorder?” and ruminating about all the ways that a diagnosis is affecting your life, she stresses. That’s why it is important for counselors to do a thorough assessment and figure out where clients are getting their information and how it affects the way they view themselves and their world, she says.
The need for validation
Counselors must be tactful when reacting to a client’s self-diagnosis, always keeping in mind how much courage it takes to seek help, even if the self-diagnosis proves to be off base. Counselors who don’t handle this situation well risk making clients feel invalidated and turn away from getting the help they need.
Validation with self-diagnosis is crucial, Collazo stresses, because it’s likely that other people in the client’s life have told them that their symptoms or potential diagnosis is “just in their head” or that they “just need to put a smile on it.” Therapy is the one place where they can finally hear someone reaffirm that they are not “sad for no reason” and they are
not “broken.”
Collazo first listens and validates clients’ thoughts and feelings about a potential self-diagnosis. Then he explains about diagnostic criteria and, depending on the client’s needs, offers to do a formal assessment. “If their self-diagnosis was right, then great,” says Collazo, “but if not, then counselors [can] offer hope; they can still help the client” get better.
McMickle also errs on the side of validating clients who come in with a self-diagnosis, even while exploring their symptoms further. If a client states that they have had a panic attack, for example, then McMickle would acknowledge that they’ve experienced some type of pain or discomfort (regardless of whether the occurrence was an actual panic attack). She would also ask about the context surrounding the assumed panic attack, any other symptoms the client is experiencing and what the client knows about panic attacks from online or social media.
Learning how to navigate a client’s self-diagnosis without invalidating the client is a crucial skill, McMickle says, because the therapeutic relationship is the cornerstone of effective counseling. “No matter what clients come in with — right or wrong, accurate or not — they’re coming in [to] a really vulnerable space,” she says. “It’s so important that we are really understanding and sitting with them and holding space for them so they can continue talking about things that are upsetting to them and come back for better assessments.”
Collazo acknowledges that it can be difficult to balance validating with assessing the accuracy of someone’s self-diagnosis. He finds that asking questions and remaining curious are good approaches to learning more about what the client is experiencing while maintaining a healthy therapeutic relationship.
Kennedy also relies on questions to discover more about the self-diagnosis. She may ask a client, “What does it means for you to have that diagnosis? Why does it feel important to have it? Does it help you better understand yourself or better learn coping tools? Does it give validation to your pain?”
Even if clinicians disagree with a client’s self-diagnosis, they can still validate the client’s feelings, Tran asserts. If a client says, “I’m feeling sad, and I think I have depression,” she rephrases the statement by saying, “So, what I’m hearing is you are feeling sad. Can you tell me more about that?” This language allows her to clarify what the client is experiencing and provides her with more insight.
The need for a safe space
Recently, after TikTok videos about Tourette syndrome went viral, doctors started noticing an increase in teenage girls who were suddenly experiencing verbal and motor tics. Tourette syndrome tics are unique to each person, so when doctors from different geographical regions observed similarities in the girls’ tics, they started to suspect that social media was playing a role. However, the evidence was anecdotal and overlooked other contributing factors (such as anxiety and stress). Others fear that blaming social media could further stigmatize Tourette syndrome, especially for young women, making it harder for people to disclose symptoms
to professionals.
Likewise, counselors sometimes forget how difficult it is for people to ask for help, Fleming says. By the time someone calls or is sitting in the counselor’s office, they have typically invested a lot of thought and energy in making that decision.
Fleming cautions counselors to avoid hinting at any negative reaction they might have to a client’s self-diagnosis. They should refrain, for example, from saying, “Oh, everyone has that diagnosis on TikTok.” Reacting in disbelief or dismissal could be harmful to the client.
To make it easier for clients to disclose potential diagnoses or symptoms that resonate with them, Fleming invites clients to text her anything they might be hesitant to mention in session, such as their eating habits or a potential self-diagnosis of an eating disorder. She doesn’t respond to the text, but at some point during the next session, she says, “You texted me that you wanted me to check in about your eating habits. How’s that been going for you this week?” If the client still doesn’t want to talk about it, Fleming doesn’t push it any further in the moment but makes a note to try again in a future session. The important thing is for counselors to give clients a safe space to bring things up so they can address it when they’re ready, she says.
Counselors also must be aware of their own preconceptions and stereotypes about certain disorders. Kennedy has noticed that some clinicians may be quick to dismiss a self-diagnosis of bipolar disorder, for instance, because the client exhibits healthy boundaries. Because of stereotypes, even some counselors may incorrectly assume that this isn’t possible for someone with bipolar disorder. Or, if the counselor is fond of the client, they may be hesitant to give the person such a stigmatizing diagnosis.
It is particularly important for clinicians to create a safe, welcoming space for younger clients and avoid dismissing their thoughts and feelings around self-diagnosis. “Adolescents are still trying to figure out who they are, and they sometimes latch on to things that aren’t them” in the process of discovering more about themselves, McMickle says. For example, adolescents often pull away from people, especially their parents, as they form their own identities, but this behavior is similar to traits associated with borderline personality disorder, she notes. So, if they see a video about that disorder, they may worry that they have it and interact with the world as if they do have it.
Kennedy has noticed that with some younger clients, self-diagnosing may be more about needing someone to see their pain or seeking validation from their parents than about being accurate. But it is still important to validate and explore this diagnosis, she emphasizes, even if it doesn’t align with what the counselor is noticing in session.
From self-diagnosis to self-awareness
“Self-diagnosing is giving people more [of an] ability to advocate for themselves and say, ‘No, I think I have this, and this is why,’” Fleming says. “It’s giving people a voice within the professional world.”
It’s also helping to normalize mental health. A few years ago, Fleming often had to reassure clients that it was OK to have anxiety or ADHD. Now she’s having fewer of those discussions because with the increase in self-diagnosis, the stigma around mental health is also lessening.
In addition, social media is helping people develop a sense of self-awareness related to mental health. “People feel less isolated and have a deeper understanding of themselves,” Maalouf says. Many of her TikTok followers leave comments on her mental health videos such as “This explains so much,” “I thought I was the only one” and “This is helpful because now I understand what’s happening with me.” She’s also noticed (based on comments and messages) that this awareness sometimes results in people seeking out counseling to find ways to manage or cope with these issues.
Tran has noted an increase in self-awareness among clients and prospective clients as well. In fact, she considers self-diagnosis to actually be “self-awareness around symptoms.” Before the COVID-19 pandemic and the rise of mental health on TikTok, Tran would get emails from potential clients saying they were looking for a therapist and she sounded like a good fit. Now, she’s noticed the emails are more detailed: “I’ve been struggling with sleep, and I want to have a better relationship with my brother. I’m looking for a therapist with these particular values. Are you able to help me?”
When someone has a general idea of what they are experiencing, they tend to seek out a clinician who specializes in the mental health issue with which they are struggling, McMickle says. This also helps her when she needs to refer someone because it gives her an idea of what type of therapist the person is searching for.
Counselors can make self-diagnosis more of a collaborative process in session rather than viewing it as “dangerous” or “misguided.” If a client comes to Kennedy thinking that they have a certain diagnosis, she goes through the criteria with them and asks what resonates with them. When clients seem to want or need a particular diagnosis assigned to them, she asks about the reasoning behind that. Is it to get accommodations at work or school? Is it to get medication? Is it to have peace of mind and a better understanding of themselves? If clients do need accommodations or medication, Kennedy will recommend a more formal assessment, but if they just want to understand what they are experiencing and find ways to manage it, then she uses their self-diagnosis as a framework to learn more about the client and help them find a treatment plan that works for them.
“When a client comes in with a self-diagnosis, it’s a very brave act,” Kennedy says. “It’s very brave and vulnerable for them to be testing this theory out with you. It’s brave and vulnerable that they’re letting you into their inner world in that way. It can be such a powerful space in the therapeutic relationship to welcome it [the self-diagnosis], even if you don’t quite see it or even if it doesn’t feel ‘right’ for the client. It still allows us to learn so much more about them and to have a moment where we really welcome their vulnerability and create more safety in the therapy room.”
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Read more in an online companion piece to this article, “The rise of counselors on social media.”