Warning: the content in this blog post may be upsetting and hurtful to the reader-it contains insulting and coarse language found on-line describing patients with PNES
For a few months three of us have been working on a project examining how often PNES (and all the other names that this condition goes by) appears in the Internet and creating sort of tally. The way we approached this search task was by entering different key words including “PNES,” “dissociative seizures,” “NEAD,” “pseudoseizures,” etc. One of the many on-line sites we explored was Twitter.
A few weekends ago, I received a distressed message from one of my two colleagues, Jace Jones-who had been assigned to Twitter. When he had searched for the keyword “pseudoseizure” he had made some very troubling discoveries. I went on to Twitter myself to check what he was telling me because I had to see it with my own eyes to believe it.
When we searched Twitter using the keyword “pseudoseizure” a substantial number of tweets by self-identified professionals popped up and they were shockingly negative and frankly offensive when describing PNES patients. Some examples included (and by the way, these are open to the public, anyone can read them):
1) from a self-defined “Earth’s greatest medical news source for physicians, nurses, other healthcare professionals, and students.” https://twitter.com/GomerBlog/status/552926892614254595 Tweet: BREAKING: Patient Admitted with Acute on Chronic Bullsh*t #ER #nursing #medicine #surgery #healthcare #health #pseudoseizure #GomerBlog,
2) https://twitter.com/Kr1s03/status/545006701683163136 – I lied when I said a pseudoseizure patient was the worst kind of patient. A patient with lice and/or nitz takes the cake
3) https://twitter.com/50shadesofFL/status/633087782748049408 – Patient: I need to use th th th th th the bathroom. Me: you can you stay in bed and use the u u u u u u u u urinal”,
4) https://twitter.com/Lisa03755/status/689704174133575680– “#tipsfornewdocs if patient is convulsing, but still tweeting, confidently diagnose a pseudoseizure”,
5) https://twitter.com/Hypo_caffeinic/status/628521223098478592 -“My first pt of the day was a pseudoseizure & not a very impressive one at that. #atleastwetyourself #orfeignbeingpostictal”, 6) https://twitter.com/Sassy_Nursey/status/571444181111070720 -“Currently cracking up about the new name for pseudo seizures. Psychogenic Non Epileptic Seizures. PNES. Bc were educated adults. ”
Can we know for sure if these tweets are in fact coming from licensed and certified health professionals? No. But if they are, I am disgusted. What a show of complete ignorance, callousness and unprofessionalism. PNES is a very serious and potentially disabling condition. Very often patients have been terribly abused and traumatized prior to developing the psychogenic symptoms that these “health professionals” find so distasteful, ridiculous, and laughable. Imagine now that this same psychologically damaged patient comes to the hospital suffering and seeking help, comfort, perhaps even a remedy, and this is what she/he encounters? I am repulsed by this thought.
My gut response:
“Shame on you” doesn’t even begin to communicate what I am thinking right now about these tweeters. I hope that none of my patients or any person suffering from PNES ever encounters one of them. I would even go as far as recommending that these tweeters reconsider their career choice- I would urge them: Seek a job where you have zero contact with humans, preferably work with inanimate objects where you can be as cruel and sadistic as you wish, but please stop exposing those who are sick and suffering to your ignorant insensitivity.
After several deep breaths and activating my rational brain:
Since I believe in rehabilitating and helping people who are troubled, I consider the possibility that these tweeters have perhaps never been provided with education on mental health issues and need to understand the importance of feeling empathy for their fellow men/women if you are to work in the health field. For this purpose, I invite them to come to our annual conference on PNES in October in NJ to learn about the condition from health experts, meet patients who are bravely living with it and trying very hard to get better, and speak with me. And lastly, this is why the term “pseudoseizure” should be abandoned- because of its pejorative connotation, it supports the mistreatment of these patients. None of the other searches for keywords on Twitter revealed this type of bias towards PNES as did “pseudoseizure.”