Many health professionals still hold misconceptions regarding PNES itself. Many still believe that the psychogenic episodes are somehow voluntary in nature. Others are uncertain about prognosis and when it comes to treatment many tend to offer a knee-jerk suggestion of CBT (cognitive behavior therapy) without taking into account that a substantial number of mental health professionals may be trained in CBT but may not feel comfortable treating a patient who has seizures (albeit psychological seizures). (One of these days I plan to write a blog about how the recommendation of “you need CBT” has become the “new” brochure/pamphlet that many epilepsy centers used to provide patients before sending them on their merry way-but I digress). So it stands to reason that if the doctors and other health professionals are not really all that familiar with the condition, they are obviously less able to provide patients with useful information. So, it’s not unusual that patients are left feeling confused about their diagnosis and unsure about what to do about it.
Therefore, in the age of the internet, it is not surprising that patients who are having seizures that are taking on average 7.2 years to properly diagnose or who are given the diagnosis in the hospital and little else other than a recommendation to “seek mental health help,” may launch their own online searches when trying to understand their symptoms and find treatment.
Based on this supposition, our group decided it might be interesting to see what can be found online about PNES (NEAD). Our project examined what PNES content could be found through Google® searches (which produced many Facebook® pages), YouTube®, Instagram®, and twitter®. What we found was encouraging in that there are a handful of professional sites exclusively dedicated to PNES (NEAD) and YouTube videos that are doing a very good educational job. In addition, these sites were easily found through our search which suggests people looking for information on PNES (NEAD) will probably find them with relative ease. We also found many websites that are not exclusively about PNES (e.g. from medical centers, Huffington Post) that included one or a few posts or articles about PNES (NEAD). We’re pretty sure these help permeate the internet with information about this condition which raises awareness. And as for patient hosted content on PNES (NEAD), we found numerous exclusive and non-exclusive sites that address PNES (NEAD). One finding that especially stood out is how much more creative and willing to use different hosting options including Instagram®, Facebook®, the Experience Project, etc. were the patients than the professionals. In our conclusions, we encouraged professionals to consider following the patients’ lead and venturing into different mediums that might be useful in reaching the PNES (NEAD) community in the future.
You can find this free article here if you would like to read it: