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TikToker Dixie D'Amelio Reveals She Has Psychogenic Nonepileptic Seizures

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What happened; TikTok star Dixie D’Amelio shared that she has psychogenic nonepileptic seizures (PNES) during a TikTok livestream. D’Amelio said in the video that these seizures, which are caused by psychologic factors, led her to be hospitalized and left her on bed rest for five months during her junior year of high school. D’Amelio revealed her PNES diagnosis after accusations surfaced online that she faked her seizures at school.

In my sophomore year in high school, I had very bad anxiety, and it got so bad that I developed psychogenic nonepileptic seizures. I developed a lot more things that come with psychogenic nonepileptic seizures like a stutter. — Dixie D’Amelio


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*permission by dixie to post this* #dixiedamelio talks about people from her school spreading her personal issues

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The Frontlines:  PNES are seizures caused by psychological factors as opposed to epilepsy. People with PNES may experience convulsions that resemble tonic-clonic seizures.

There are many different symptoms that people with PNES can experience. Here are some of the more common ones:

  • Side-to-side shaking of the head
  • Bilateral asynchronous movements
  • Weeping
  • Stuttering
  • Arching of back

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A Mighty Voice: People with PNES are often dismissed as faking their condition like D’Amelio. Tabitha Johnson wrote an open letter to nurses who accused her of faking her seizures. “Just because I battle something you may not see or understand doesn’t mean I’m faking. Every day I wish I would wake up and realize this was a dream or bad joke. It’s not. I have to eat, sleep and breathe in fear of when the next seizure is going to strike or when my meds will once again throw my blood levels off.” You can submit your first person story, too.

From our community:

PNES how long does your seizure last and how does it feel?

Other things to know: Accusing people of faking illness symptoms can be harmful to their mental health and their lives. As D’Amelio explained in her TikTok livestream, the accusations she faced after having PNES episodes led her to go to a new high school. You can read some first-person stories here to understand the toll of being told you’re “faking” a chronic illness or symptoms:

How to take action: If you want to learn more about how to support people with PNES, you can read this article by Sarah Weikel, who also has the condition. You can support D’Amelio by following her on TikTok.

Screenshot viaDixie D’Amelio/TikTok

Originally published: August 18, 2020
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