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fnd patient and fnd provider talking about fnd

Social Media & Functional Illnesses: Patient-Provider Series Talk #5

fnd community fnd education fnd expert fnd patient experience fnd professional social media Jul 26, 2025

Watch video interview here

Teja Zeribi:

This is a difficult topic of discussion. FND has historically been, and in most places still is, highly stigmatized and misunderstood by medical professionals, with poor access to compassionate and knowledgeable care. I for one, felt incredibly isolated, misunderstood, and hopeless at the time of my diagnosis in 2020, and lacked people with a shared experience. This is the very reason I started the Young Adult zoom peer support meetings with 2 others. Even for me as a moderator, I am very close with the other moderators, consider them close friends, and text or call both almost daily -having people who share and understand your experiences, when few do, is an incredible gift. That said, it is not surprising many have turned to social media to share their experiences of FND with the world, both to find connections and validation from other patients, but also spread awareness and share their experiences to people who may be uninformed.

The reason this topic came about is because I had a video on FND pushed into my “for you page”. I intentionally try to keep that away from my social media. Since FND advocacy and support already dominates a lot of my life, social media is purely a place of funny pictures, connecting with friends in other places, etc. for me. This video, it seemed, contained copious amounts of misinformation that was hitting a population of very vulnerable people. This made me feel pretty mad and sad, which is exactly why I try to keep FND out of my social media. As I was about to click not interested, I noticed Dr. Velazquez had commented on the video criticizing it and sharing a desire to talk to the creator and come to an understanding. After clicking not interested, I texted her about it and if she was having success combatting misinformation. Hence, this conversation was born.

I don’t have an easy answer. What I will say is, as a human with FND and someone who cares deeply about the community, there is a lot of content that can, and maybe is, doing potential harm. There is no shortage of misinformation or videos of symptoms that may be difficult for those with FND or loved ones to people with FND. The content I have seen that is “most popular” tends to be angry, negative, and distrustful of the medical system; while those feelings are incredibly valid and experienced by those with FND -these videos don’t tend to help move people forward. At the same time, there is a legitimate need to spread awareness about the condition, destigmatize FND and all seizure/neurological conditions, show the human side of the diagnosis, and the hope, joy, and connection that can exist even in people with the condition. It is a balance of showing how hard the condition is without it turning to a space that can be harmful.

What ideas do YOU have?

Watch FULL video interview here

Connect with Teja: [email protected]

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Disclaimer: Dr. Velazquez has not had the chance to review the above article for scientific accuracy, nor she is endorsing any type of opinion, comment, suggestion, product or treatment possibly mentioned. You are the sole responsible for the interpretation of the data shared by our Patient Collaborators or Personal Experts. Whenever in doubt you can contact directly the person who wrote this Blog Post article and/or you can report it to Science & Shamanism, LLC, Dr. Velazquez and/or her designees. We will always try to help! Within the limitations of our human existence and capabilities, considering scarce time and high workload.

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