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Why you should think twice about self-diagnosing a mental health condition with an online survey

Updated: Apr 10, 2023

Self-report surveys- or inventories as mental health providers call them-- are freely available, thanks to the efficient data-sharing capacity of the internet. These inventories cover a broad range of symptoms and mental health conditions, including (but certainly not limited to) depression, anxiety, ADHD, PTSD, Autism, substance use, and sleep disorders. While some of these checklist-style inventories can be the precipitant to a client's decision to reach out for help, they also come with some pitfalls to be wary of.

Many inventories that are accessible online are designed for research, only.

If you find an inventory online, there's a good chance it was intended for research purposes. Most of the self-report inventories related to Autism Spectrum Disorder fall into this category. This is a consequence of decades of research aimed at diagnosing ASD at younger ages in an effort to provide early intervention, elucidating co-occurring disorders common with ASD, and identifying similar symptoms in family members who do not meet the full diagnostic criteria. Sometimes, the research is focused on identifying theoretical subtypes of ASD or even distinguishing it from other conditions (e.g., Nonverbal Learning Disorder, Social Anxiety Disorder, Intellectual Disability, etc.). At any rate, the threshold for using an inventory in research vs clinical practice really hinges on the ability of an inventory to accurately identify a condition (e.g., Major Depressive Disorder) and rule out individuals who do not have that condition (e.g., Persistent Depressive Disorder). When used for research only, the bar for accuracy can be much lower, as statistical methods can help researchers decide which items or symptoms to ignore. Inventories used in clinical practice are necessarily more precise and are designed to aid in differential diagnosing. The stakes are much higher when used in clinical practice, as the diagnoses we make can have life-long impacts. Research results, on the other hand, are rarely tied to specific individuals.

Some inventories are not tested at all.

As shocking as this may sound, there are a lot of untested inventories and personally-determined "facts" on the internet. People can post and share whatever they want. While personal experience has merit in its own right, claiming an authority on a particular topic is a far stretch. I have not seen 2 clients with the same exact diagnosis. Ever. Even when they share the same diagnostic code (e.g., Generalized Anxiety Disorder). While there is clearly some overlap in themes, it is remiss to think that one person's experience of a condition should be the measuring-stick for others. The reason why we research mental health conditions is precisely to obtain those objective shared experiences-- the overlapping themes. A person could (and likely does) have more than 1 mental health condition. When their singular experience is shared as the source of identification for others, it may be impossible to know which symptoms come from one condition (e.g., social anxiety disorder) and which symptoms arise from the other (e.g., Autism). Not without adequate testing of the specific inventory with people who have both conditions, people who only have one condition, and people who have neither condition.

Most inventories require additional data to make a definitive diagnosis.

Even when you find an inventory that is validated for a particular diagnosis, few inventories are meant to serve as stand-alone diagnostic measures. If they were, well, health insurance companies probably wouldn't pay to have you visit your psychiatric or primary care provider when you wanted to try medication for your symptoms. They'd simply pop your information into a neat little form and send you some pills in the mail. Even with the best designed measure, human beings have a habit of being unpredictable. We over- and under-report symptoms, we forget information, we choose what questions are acceptable to answer, and we simply don't know certain things about ourselves-- these are called "blind spots." Often, inventories that are designed for clinical purposes are just one piece of the puzzle. Clinical interviewing and use of additional symptom inventories is necessary to provide a thorough, differential diagnosis.

Few inventories limit their items to symptoms unique to one particular diagnosis.

Many diagnoses have shared symptoms. Major depressive disorder has a subtype that includes "anxious distress." The most common overlapping diagnoses are depressive disorders and anxiety disorders. Inventories often do not take this sort of overlap into account, as they are often used to measure severity of symptoms, rather than to differentiate the source of symptoms. Distinguishing between depressive and anxiety disorders requires a fine-toothed clinical interview. I have found numerous inventories for Autism Spectrum Disorder that are prime examples of this issue. When I look over an inventory as a clinician and can quickly identify symptoms of at least 3 different diagnoses, I get concerned about how clients are using them to self-diagnose. Unless you have training in diagnosis and measurement, it might never occur to you that the inventory is just not what it says it is. These types of measures have what we call poor construct validity. That is, it doesn't measure what it says it measures. The nature of co-occurring mental health disorders contributes to this problem.

All inventories should be interpreted by a qualified mental health or medical professional.

If the previous 2 points haven't emphasized this enough, it is important to involve a mental health or medical professional in the diagnostic process, both for accurate diagnosing and (hopefully) treatment. On a very simplistic level, not all inventories are scored in a straight-forward manner. There may be more recent versions of the inventory that are not published online. While there is something to the "name it to tame it" phenomenon, having the wrong diagnosis to start with can feel like a loss of identity when it is eventually corrected. Having been on the delivery end of such situations, I can attest to the anguish and frustration that ensues. If a person self-diagnoses and subsequently, tells friends and family, joins a support group, makes vlogs, or informs their school or employer, they've built up an important sense of identity around the diagnosis they think fits for them. When they eventually find their way to a mental health provider's office, where they receive the news that "it's not X, it's Y," you can imagine the level of grief, loss, and, potentially, anger that they may feel. I have, more than once, been the bearer of such bad news-- and have witnessed the accompanying disbelief, sadness, or ire. I never think it's a good idea for anyone to tie their identity to any sort of label, whether it's a medical or mental health diagnosis, a sport you play, or a job you do. You are a unique and wonderful person with your own special twist on humanity-- let that be the source of your identity and not a cluster of symptoms or behaviors that you share in common with other people.

Self-diagnosing can have some negative consequences for the person self-diagnosing and for people who have been diagnosed by a clinician.

I covered some of the risk of self-diagnosis above, though there is more to consider. Sometimes, when a person assumes a diagnosis, they lean too far into the diagnosis and start to use the label as a reason for things that they do, think, or feel. This can result in a self-fulfilling prophecy in many different ways. For someone who self-diagnoses ADHD, they may tell people that they cannot do X because they have Y and Z ADHD symptoms. The reasoning can become circular: "I have depression, so I sleep until noon." Over-sleeping is a symptom of depression and one that often needs to be addressed, lest the person lose contact with all valued activities and experience even worse depression. Identifying a condition is not meant to provide an arsenal of excuses for behavior. A diagnosis is best used to inform goals for treatment and intervention, which is something that a clinician can assist with. For example, a core feature of ADHD is inattention, so we would need to work on building skills for concentration and focus. If a person self-diagnoses, there's no clinician there to help work on a treatment plan and frame the work of moving forward, rather than lapsing into the diagnosis itself. Self-diagnosis-- or, more accurately, self-misdiagnosing can be hurtful to people who have the actual diagnosis. If a person misdiagnoses themselves and goes public with their purported condition, people who actually have the condition may wonder why they are functioning so differently (and often with more difficulty) than the person who has misdiagnosed themselves.

Final Thoughts

If you think you may have a mental health condition, resist the temptation to self-diagnose and make an appointment with a qualified clinician. Find a mental health provider trained in differential diagnosis or more in-depth diagnostic assessments. Your mental health provider can help to formulate a treatment plan and keep your identity separate from that of the diagnosis.

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Smarr, K. L., & Keefer, A. L. (2011). Measures of depression and depressive symptoms: Beck Depression Inventory-II (BDI-II), Center for Epidemiologic Studies Depression Scale (CES-D), Geriatric Depression Scale (GDS), Hospital Anxiety and Depression Scale (HADS), and Patient Health Questionnaire-9 (PHQ-9). Arthritis care & research, 63 Suppl 11, S454–S466.

** DISCLAIMER: The information in this blog is informative only and is limited to the experience, knowledge and opinions of the author. The content should be read with caution and individuals are responsible for doing their own research and speaking with relevant professionals (e.g., legal, mental health, medical, insurance plan, educator, etc.) before making any decisions based on the information read here. Use at your own risk. The information in this blog is not a substitute for consultation with relevant professionals (e.g., legal, mental health, medical, insurance plan, educator, etc.). The author, entity, and/or poster of this content is not responsible for its use.**


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