Social Media Can Be a Poor Tool for Self-Diagnosis

 ADHD Weekly, May 2, 2024

You may be tempted to turn to social media or the internet to self-diagnose based on your perceived physical or brain-based symptoms when you can’t find or be seen by an ADHD specialist. Some parents have the same impulse when watching their children struggle with possible ADHD symptoms if they are unable to find answers locally.

With long wait times to see an ADHD specialist the norm in large parts of the United States, many adults and parents are seeking support and possible answers online. If you’ve watched a video on social media and think, based on the video’s description, that you or your child may have ADHD, proceed with caution and bring your concerns to a healthcare provider.

Attempting to self-diagnose ADHD or any other condition is not recommended by professionals. Becoming an educated self-advocate is important, however, when seeking any evaluation and then working with a professional to establish an effective treatment plan.

Learning more about a medical condition while waiting to be seen by your healthcare provider or a specialist can help you feel less alone. You might find that the people who share their personal health experiences on social media also share strategies that could be helpful for you in the short term.

Watch out for cyberchondria

Before following any advice offered through social media, check out the information and who is providing it. If you can, share what you’ve learned with your primary care provider. Alternately, compare what you saw on social media with the information and recommendations available on trusted websites and from evidence-based organizations.

Videos shared on social media about physical and mental health conditions have convinced some children and teens that they have those conditions, including ADHD, even when they haven’t struggled with those symptoms before watching a video.

According to one survey of teachers and school staff say they can tell which medical conditions are trending on video platforms after hearing their students claim to have that condition but not display any symptoms of it.

The survey results show that “nearly two-thirds—65 percent—of district and school leaders and teachers… said their students ‘sometimes’ or ‘frequently’ use social media to diagnose their own mental health conditions.” Often referred to as cyberchondria, experts caution it can lead to other issues, including anxiety, depression, lack of proper healthcare, and dangerous self-treatment.

Questionable social media advice

Questionable information on social media is a major health concern, says researcher Anthony Yeung, MD. He and his colleagues reviewed one hundred of the most popular ADHD videos on TikTok.

“Approximately half of all videos analyzed were misleading,” Dr. Yeung writes, “and the misinformation they contain has the potential to contribute to health anxiety or lead to increased healthcare utilization.”

His study also pointed out that the videos shown automatically to TikTok users are similar to ones they have spent longer amounts of time watching. The more videos on ADHD you watch, the more videos on ADHD the platform will automatically place in your feed. Since videos of personal stories are the most popular, those are also the most likely to be served to viewers.

“Videos on the platform may also be recorded to be humorous or spontaneous, and not necessarily recorded with the intent to disseminate medical information,” he writes. “However, even videos made without intent to disseminate medical information may describe non-specific symptoms, overgeneralizations, and characterizations about ADHD that could be misleading to viewers.”

The results of his study prompts Dr. Yeung to caution viewers about taking medical advice from popular social media channels. He recommends they take those suggestions to their own healthcare providers and discuss the ideas there before trying them out.

Ed Hallowell, MD, started posting ADHD videos on TikTok to combat widespread misinformation.

“Where there was a gap was a medical expert perspective, and so I decided to create some videos providing this,” he says.

Dr. Hallowell’s videos have been very popular and have helped many people begin conversations with their healthcare providers.

Both Dr. Yeung and Dr. Hallowell are concerned about the trend in self-diagnosis through social media. Dr. Yeung points out there is a risk of individuals seeking treatment for ADHD when they may not have ADHD or seeking treatment that is not right for them based on their needs.

That’s not to say the increased awareness about ADHD brought about through social media has not been helpful, Dr. Yeung adds. If that awareness can guide viewers to evidence-based information, then social media is a very useful tool to help people affected by ADHD.

Barriers to treatment

People frequently encounter barriers to getting an evaluation for ADHD. This is one of the reasons some attempt to diagnose themselves.

Allison Gornik, PhD, and Rod Salgado, PhD, studied many of these healthcare barriers and concluded they are due to a combination of geographic, economic, and demographic reasons.

“Complicating matters further, these variables rarely exist in isolation, and, together, these barriers may make accessing appropriate ADHD services even more difficult,” they wrote for Attention magazine.

Barriers to getting a proper ADHD diagnosis or continuing a treatment plan could include living in an underserved area or not having robust health insurance. For those who do have health insurance, some plans won’t cover certain types of medication used to treat ADHD and don’t cover ongoing therapy that often is needed. An ongoing nationwide shortage of providers means that not everyone who has ADHD will receive a diagnosis or be able to follow their treatment plan.

Take care when it comes to following any advice found online or on social media. Investigate your sources further and check their information against websites that emphasize the research on ADHD and evidence-based approaches to symptoms management. Look for a supportive online community where you can ask questions or hear about another person’s experience. Sometimes, gaining a better understanding in to one’s situation is the best type of medicine.

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Join the discussion: Did something you read or watched on social media prompt you to think you may have ADHD before you reached out to an ADHD professional?