Should a lexicographer ask you for an example of ‘ambiguous’, ‘obscure’, or even ‘insufferable’, you can do little better than to point to the historical and present status of the term ‘epilepsy’. Is it a physiological illness, a cognitive disorder, a cytological disorder, an emotional disorder, all of the above, some of the above, or could it even be a mental illness? The linguistic status of epilepsy might best be described as an epistemological nightmare. More darkly, however, a non – strategic classification of epilepsy can lead into social, clinical, and even economic nightmares for patients.
To the general public, epilepsy is a boolean, convulsing vs. normal condition. To the neurologist, epilepsy is the recurrent and pathological synchronization of electrical signals from cells within a networked brain. To a patient, it can often be both a peri-ictal and a chronic mental illness. To the psychiatrist, I suspect, it has become the spectre of the epileptic personality or even worse, an untouchable caste.
Within medical literature and online media, epilepsy is explicitly excluded from being a mental illness,1,2,3,4 implicitly excluded by virtue of being referred to as frequently “comorbid” with recognized mental pathologies,5 or not mentioned where it might be both appropriate and useful to do so6. However, epilepsy has also been called a bridge between neurology and psychiatry7. This last perspective will best serve the interests of patients, and it will do so in proportion to its acceptance in the general population.
Medicine is less a science applied in practice than an art informed by science. In line with this point, too much epistemological purity does not always foster the art of helping people with epilepsy. The best classification for a disease will often be the one which fosters a thought process useful to helping the greatest number of people. That is a scientifically abhorrent notion, but patients are not here to serve science.
Whereas epileptogenesis can occur in any part or parts of the cerebrum, the conscious experiences of epilepsy to the patient have few absolute limits. Parietal hallucinations present a myriad of bodily sensations from tingling, to pain, to a surreal distortion of perceived sizes of limbs8,9 all of which must affect or impair both motor function and, consequently, self confidence. Occipital activity might lead to innumerable experiences in as much as it can spread so quickly outside of the occipital lobe. Its speed often poses difficulty to interpreting an EEG10, and it can give rise to behavioral automatisms (relatively discrete, simple actions) by connecting to the temporal lobes11. Frontal lobe epilepsies are renown for their spontaneous motor automatisms, but automatisms can include speaking in sentences, and using profanity as well12. The auras, automatisms, and various forms of memory impairment seem innumerable13.
Perhaps excepting the profanity, a doctor can explain most of the above phenomena to a patient in non – psychological terms and outside of a psychological context. Then perhaps the patient may be less likely to self – stigmatize. However, experiencing such phenomena simply wears a person thin. The stress they cause gives reason enough for seeking psychological counseling. To this extent, calling epilepsy a mental illness has some practical value. Employers and friendly acquaintances can get their heads around epilepsy as a mental disease, with qualifications, in which most symptoms are less ‘mental’ per se than physiological with a variety of peculiar behavioral manifestations.
The reticence to label the disease as mental takes on an air of absurdity in light of its connection to psychoses14,15,16,17. The DSM-518 skirts this issue by considering epilepsy to be frequently ‘comorbid’ to various mental disorders. However, it then nests psychoses as ictal, postictal, and interictal. This semantic circularity holds out as much promise for good results to a patient seeking psychological care as chanting ‘anamzaptas’ (the anticonvulsant version of ‘abracadabra’19) holds out to the patient in status epilepticus (an exceptionally prolonged and dangerous seizure).
Be they patients, family members, guidance counselors, or insurance company employees, many people can more usefully accommodate the disease as a mental ailment than as the boolean, neurophysiological ailment it is excessively perceived to be. Epilepsy is the quintessential hybrid between visible and invisible diseases. The visible seizures speak for themselves. Unfortunately, the invisible disease that complicates our mental activities so badly fails to exist in the public eye because epilepsy is not a ‘real’ mental disease.
The perception of epilepsy as (a) a non – mental pathology, (b) a state – dependent mental pathology (sensu Besag20), or (c) a chronic mental pathology affects the accommodation we receive in school and workplace in varying ways. An example of the detrimental impact of the non – mental view (which I describe elsewhere on this website) can be found in the case of President Obama firing his Commerce Secretary Bryson who suffered a seizure immediately after a traffic accident. Bryson was behaving oddly during the episode suggesting that his mental state was being heavily influenced by epileptic brain activity prior to his fully recognizable seizure. President Obama was likely ignorant about the diverse nature of seizures, as he fired Bryson twelve days later. Perhaps Bryson’s job performance also suffered from his general medical state (if, in fact, he had epilepsy) which then lead to his dismissal. This was not likely for at the Commerce Department’s website, Bryson’s role in government was described quite complementary. His dismissal seems more readily explainable by prejudice. The public’s and the President’s ignorance of the diversity of behavioral events that can occur during an impaired state in epilepsy leads me to believe that perceiving epilepsy to be a state – dependent mental illness will aid sufferers in getting reasonable job accommodation for keeping a position they already have.
Understanding that epilepsy can also be seen as a chronic mental disability may help sufferers shift into more suitable educational tracks or forms of employment. As an example, I submit my own life experience. In my doctoral thesis work, I analyzed wildlife population genetics in a molecular genetics laboratory. The work was identical to the criminal forensics of any of the “CSI” television series. At the early stage of my study, laboratory work went smoothly and productively, as my temporal lobe epilepsy remained a minor bother, and my memory was sharp. These circumstances changed after a status event, and like so many others with temporal lobe epilepsy, my memory suffers chronic impairment even today.
My work required minding far too many details in executing protocols, scheduling equipment use,and keeping inventories to remain suitable for someone suffering memory difficulties in addition to imperfect seizure control. I wished to switch to some work on mathematical theory that was closely related to my empirical work. Math needs very little memory. It does not require being mindful of the numerous logistical details of research common in most of the life sciences (and nobody has ever been hospitalized for having spilled an equation on themselves during a seizure).
Unfortunately, as epilepsy falls entirely outside of the realm of chronic mental illnesses, I never thought to seek medical counsel for what sort of work might suit my new mental disability. Neither did any physician inquire into the nature of the work that I did. Worst of all, however, the faculty with whom I worked preferred the ignorant view of epilepsy as a non – mental, two – state disease in which a person can function normally in all tasks when in the absence of convulsions. Over the course of some years, the balance of my work with faculty became hostile to no productive end. Were I to have gotten reasonable accommodation for a mental illness, my education would have progressed in a more congenial manner than it did.
Not all social barriers to a productive and self – sufficient life with epilepsy come from stigma. In my own educational experience, I never perceived any at all. The enemy was both ignorance and political correctness from beginning to end. But to whatever extent stigma causes suffering, I doubt that shifting epilepsy at least part way back into the realm of mental illnesses can make it any worse than it currently is. We have already been found to be stigmatized worse than people considered mentally ill21. One can only go up from the bottom.
Thankfully, excellent guidance on making professional accommodations for persons with epilepsy can be found at the Job Accommodation Network. The website’s attention to cognitive impairments rather than to seizures makes it exceptional. It offers a wealth of ideas to cover time management issues, stress management issues, and a variety of tips pertaining to spatial disorientation and social orientation among many others. Its importance comes from perceiving epilepsy to be a psychological impairment rather than just a neurological one. Every doctor should print out the JAN web address and give it to their adult patients.
When the knight in shining armor, otherwise known as sodium phenytoin, entered the arena of epileptology, he brought along a stowaway. That stowaway was the the germ theory of medicine, and in spite of its scientific illegitimacy in this arena, its reductionist philosophy has benefited patients magnificently through strides in pharmacology. But epilepsy is not a germ, and new improvements in the quality of life of people with epilepsy will not come so much from a reductionist frame of mind as from a more esoteric, holistic, and results – oriented approach to thinking.
Psychiatry and neurology are again finding common ground over epilepsy7. I see little evidence, however, of public perception changing in a similar manner. It will change all the more slowly so long as psychiatrists can hide behind textbook definitions that have outlived their usefulness. Epilepsy is a legion of non – discrete diseases with a common cytological cause. Each kind has a different mental profile with varying levels of intensity of mental effects. Epilepsy is not simply one disease with a restricted set of symptoms and treatments as the public perceives it to be.
Psychiatrists must hasten to find their proper niche which might be as an educator and advocate as much as a therapist. The letter from a psychiatrist to a school, to an employer, or to legal counsel explaining the mental manifestations of the disease generally and and of particular kinds of seizures can greatly benefit the patient materially. Such support also helps to reduce a patient’s stress levels to a degree that the medical community might underapreciate. To make faster progress of this kind, everyone first needs to dispense with the idea that epilepsy is not a mental disease. Doing so will aid patients in procuring the professional accommodation that we need to live a productive life. Semantics matter greatly.
References
1. Goel, D., Dhanai, J.S., Agarwal, A., Mehlotra, V. & Saxena, V. (2011) Knowledge, attitude and practice of epilepsy in Uttarakhand, India. Annals of Indian Academy of Neurology, 14, 116-119. http://dx.doi.org/10.4103/0972-2327.82799
2. Zaini, L.E., et al. (2013) Parent’s knowledge and attitudes towards children with epilepsy. Pediatrics & Therapeutics 3, 157. http://dx.doi.org/10.4172/2161-0665.1000157
3. Falavigna, A. et al. (2007) Awareness, attitudes and perceptions on epilepsy in southern Brazil. Arquivos de Neuro-Psiquiatria 65, 1186-1191. http://dx.doi.org/10.1590/S0004-282X2007000700018
4. LaMartina JM. (1989) Uncovering public misconceptions about epilepsy. Journal of Epilepsy 2, 45-48. http://dx.doi.org/10.1016/0896-6974(89)90058-3
5. England, M.J., Liverman, C.T., Schultz, A.M. & Strawbridge, L.M. (2012) Epilepsy across the spectrum: promoting health and understanding: a summary of the Institute of Medicine Report. Epilepsy & Behavior 25, 266-276. http://dx.doi.org/10.1016/j.yebeh.2012.06.016
6. https://allpsych.com/disorders/
7. Reynolds, E.H. & Trimble, M.R. (2009) Epilepsy, psychiatry, and neurology. Epilepsia 50 suppl. 3, 50-55. http://dx.doi.org/10.1111/j.1528-1167.2009.02039.x
8. Binder, D.K. et al. (2009) Surgical treatment of parietal lobe epilepsy. Journal of Neurosurgery 110, 1170-1178. http://dx.doi.org/10.3171/2008.2.17665
9. Shorvon, S. (2005) Handbook of Epilepsy Treatment: Forms, Causes and Therapy in Children and Adults. Blackwell Publishing, Malden. http://dx.doi.org/10.1002/9780470753286
10. Taylor, I., Scheffer, I.E. & Berkovic, S.F. (2003) Occipital epilepsies: identification of specific and newly recognized syndromes. Brain 126, 753-769. http://dx.doi.org/10.1093/brain/awg080
11. Fried, I. (1997) Auras and experiential responses arising in the temporal lobe. Journal of Neuropsychiatry and Clinical Neurosciences 9, 420-428. http://dx.doi.org/10.1176/jnp.9.3.420
12. Jobst, B. & Williamson, P.D. (2005) Anatomical-clinical localization of ictal behavior. In Kaplan, P.W. & Fisher, R.S., Eds. Imitators of Epilepsy. Demos Medical Publishing, New York 29-44.
13. Hatcher, J.L., (2015) Tacking on the Styx: an Epileptic Sails the Facts, Fiction, and Philosophy of a Mental Illness, AuthorHouse, Bloomington.
14. Tucker, G.J. (1998) Seizure disorders presenting with psychiatric symptomatology. The Psychiatric Clinics of North America 21, 625-635. http://dx.doi.org/10.1016/S0193-953X(05)70027-7
15. Jensen, I. & Larsen, J.K. (1979) Mental aspects of temporal lobe epilepsy. follow-up of 74 patients after resection of a temporal lobe. Journal of Neurology, Neurosurgery & Psychiatry 42, 256-265. http://dx.doi.org/10.1136/jnnp.42.3.256
16. Kanemoto, K. (2002) Postictal psychoses revisited. In Trimble, M. & Schmitz, B., Eds. The Neuropsychiatry of Epilepsy Cambridge University Press, Cambridge 117-131. http://dx.doi.org/10.1017/CBO9780511544354.009
17. Krishnamoorthy, E.S. (2002) Neuropsychiatric disorders in epilepsy – epidemiology and classification. In Trimble, M. & Schmitz, B., Eds. The Neuropsychiatry of Epilepsy Cambridge University Press, Cambridge 5-17. http://dx.doi.org/10.1017/CBO9780511544354.002
18. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA, American Psychiatric Association, 2013.
19. Jones, W. (1808) Credulities Past and Present. Chatto and Windus, London.
20. Besag, F.M.C. (2002) Subtle cognitive and behavioural effects of epilepsy. In Trimble, M. & Schmitz, B., Eds. The Neuropsychiatry of Epilepsy Cambridge University Press, Cambridge 70-80. http://dx.doi.org/10.1017/CBO9780511544354.006
21. Bagley, C. (1972) Social prejudice and the adjustment of people with epilepsy. Epilepsia 13, 33-45. http://dx.doi.org/10.1111/j.1528-1157.1972.tb04547.x
Tacking on the Styx 