People can also have seizures that look epileptic, but are rather psychogenic. I had a coworker who had PNES (psychogenic non-epileptic seizures) as a result of trauma, and I learned a lot about this from them.
Because PNES seizures aren’t caused by the same thing as epileptic seizures, they can look similar but people can be semi-conscious during them, generally do not lose full control of their bodies (bladder/bowels and other reflexes remain), and importantly, they can last longer than 5 minutes (even hours) without causing long-term damage.
The “do not call the police” point was especially vital for them, because people with PNES are more vulnerable to medical abuse by professionals who think they are “faking” because the seizure isn’t epileptic, and a person with PNES may have medical trauma from being treated cruelly by doctors, family members, etc. while seizing in the past. This study looked at stigma around PNES (also called functional seizures; I’m using PNES because its what my coworker called it):
Literature suggests that it can take years for patients to finally get a diagnosis of FS, but once they receive the diagnosis, it is often met with negative stereotypes and perceptions that lead to stigmatisation and treatment resistance. […] Moreover, with 34 of the 70 included data sources reflecting HCP [healthcare professional] stigma, one of the main themes that arose from this review illustrated the importance of HCPs’ acknowledgement and acceptance of their role in both perpetuating and reducing FS stigma. From our review it became apparent that HCPs’ negative attitudes towards patients with FS persist in the health community, often because of a lack of knowledge, general awareness, understanding and medical training with regards to this disorder
For my coworker, they expressed that one of the most important things for them was to just not be alone, to have someone verbally saying they were with them and it would be alright, and then to be supported according to their needs once the seizure ended. Their seizures were often triggered by stress, or from trauma triggers, so being treated with compassion, having their body respected, and having a calm environment during and after the seizure were very important.
Obviously if you have no other context, its best to assume an epileptic seizure and act accordingly. But to return to the graphic above, check for any kind of ID, whether a tag or medical bracelet or anything else! And do not treat psychogenic / functional seizures as less real or less important, and don’t let anyone around the person who is seizing treat it that way either.
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blakekathryn
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