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.”
Register: http://www.nonepilepticseizures.com/epilepsy-psychogenic-NES-events-news-conference-2016-10-29.php
We have sadly met way too many healthcare professionals ranging from emergency room physicians, neurologists, psychiatrists, psychologists and nurses who know so little about the current science around pnes. They often know only how to do two things, mistakenly treat as status epilepticus or believe that it’s a conscious faked effort for attention. Even the language used is unprofessional.
I think the greatest change must come from the teaching institutions where current science deserves more time in teaching.
As the parent of a sufferer I have spent so much energy teaching the so called professionals.
Yes! I agree: the teaching institutions need to be our target.
I been caller a liar and a faker was nothing wrong with me seeking attention it’s hurt me to the core.
Amen Lorna!! We need to get this into every hospital in America!!
Ken Ritter
Hi Ken, Our goal has to be: Education of health professionals in every level.
I had no idea how to approach this beofoe-nrw I’m locked and loaded.
Lorna,
I find these so called medical professionals, if they are, very disturbing and hope that they or anyone they know, be it family, friends, or anyone , ever to cross this path with a diagnosis of Psychogenic Non Epileptic Seizures.
I am just dumbfounded, but guess, I shouldn’t be, that the medical community that cares for us behaves this way, not just in private but on social media no less.
I need to regroup my thoughts before I type something not meant to shared.
Thanks for all you and your staff at NEREG DO.
Eric, education, education, and more education is what is needed. I see this as the only way to change these unhelpful attitudes.
Like Lisa, I too as a parent have spent countless hours not only educating individuals and healthcare professionals, but finding a qualified health professional that knows enough about PNES to treat a patient. (Thanks Dr. Myers to the rescue!)
As an ER nurse, I am ashamed to say that in the past I too rolled my eyes at “pseudo seizure” patients. Unfortunately, it was a lack of education. Boy did I get educated when my son developed them!!
This can make us mad and hurt our feelings, but it can also serve as a doorway to educating the public. Together, we can rid the public of the social stigma associated with mental health issues and help those suffering from PNES.
Thank you, Pam, for this honest and open comment. Definitely, education of health professionals on all levels is needed to hammer away at the ignorance and stigma.
i too am horrified at so called professionals behaving like this – and on social media too! in the uk medics were known to write all sorts of offensive comments in patients notes but the management are trying to put a stop to it. still if i request my medical notes from way back i am only allowed to see what they want me to! my response to these unprofessional medics is, (and its happened several times), how would you like to be treated if this happened to you, if you were suffering all these horrible symptoms and no one believed you. no one should be treated like this, whatever their ailment.
This saddens me, but doesn’t surprise me. Many patients I have worked with who have physical manifestations of their psychological concerns face this kind of discrimination and lack of empathy. I concur that education is key. I believe that language is integral to changing attitudes, and so I am very glad that PNES is the accepted term these days. This was not as regularly used even 10 years ago when I trained on an Epilepsy Monitoring Unit.
I just had this experience yesterday. I was in a state of crisis. 911 was called and when they showed up I was having a seizure. The first thing out of their mouths was “S*** what did she take?” and then once they looked me up they saw the word “pseudoseizures” in my record and promptly decided this meant I was faking it. I can hear during my seizures but cannot respond and I heard the paramedic saying “We know you are faking so stop now and we can talk.” I cannot just stop. I wish I could. The day only got worse from there as I was passive-agressively attacked by nurses and doctors at the ER. This was not how I needed to be treated on the day I was very fragile and considering suicide. I was treated as a criminal, not a patient. I needed help and kindness but all I got was doubt and disgust.
I’m sorry you had this experience. Thank you for sharing
I also have had many episodes where I was accused of faking. One paramedic told the people at my job I was faking and hit me in the chest to prove it.(I only cried out in pain) I thank god for you Lorna because you bring us hope. I am sad however because the process of educating is moving so slowly. I have had PNES for 3 years. Once my doctor diagnosed me that was it for him, I tried to find therapist on my own, but even the ones who know about PNES want me to tell them the cause before they will help me. I’ve never had any issues with anxiety or been physically or mentally abused so the origin is a mystery. I believe they are
stress related. I Am concerned because my seizures have increased over the last few months. They last as long as 30 minutes and it takes me sometimes 4-5 hours to come completely out of them. Is that normal? I never call an ambulance because of the reaction I usually get from them. But when should I call them? Thank you so much for your help!
I work in the health care system and didn’t know anything about PNES until I developed it after I hit my head and got a concussion. I was treated with epilepsy until I did a video EEG. After my diagnosis I felt ill equipped of both information/knowledge and of treatment options and resources. I felt alone and came up against this same unprofessionalism and emotional abuse. I’m ashamed to be associated with the so called professionals whose very attitudes take away people’s diginity when they are sick and seeking ways to get better, and get their life back. It angers me enough to study and research it out. Both the science behind PNES and treatment modalities. I know mostly education will be what changes this stigma. It’s just sad how we demoralize, undignify, and all around abuse and vilify what we don’t know.
I am a PNES sufferer and I can honestly say that I have been treated horribly by a great many healthcare providers many of whom were giving me good care before until they discovered I had PNES. Then it was as if I had factious disorder or was a hypochondriac even disregarding other unrelated health issues that were serious because they decided that I had been faking one illness so had no credibility. In some instances I was even injured by these people because they didn’t understand my condition and they joked about doing worse. It is humiliating and terrifying anytime I have to go to a hospital because I don’t trust the majority of healthcare providers anymore. My Doctors who know me are it. It should not be this way. These people need to be both really educated on the condition and the difference between it and they need to be given a reminder that patients are humans in need of compassion. ( a fact that would be true regardless of what illness they have)