University of Minnesota Sociology Ph.D. student Tim Ortyl died last week of natural causes related to epilepsy. I didn’t know Tim, but, by all accounts, he was a smart, fun, and kind guy and I know his family, friends, and colleagues will mourn his loss for some time to come. While others will commemorate Tim, as a sociologist and an epileptic myself, I would like to use this space to briefly discuss the lived experience of those with epilepsy.
Not all epilepsy is the same. People ranging from Harriet Tubman to Vladmir Lenin to Prince all have had epilepsy and, according to the Epilepsy Foundation, it affects 2.2 million Americans and 65 million people worldwide. However, “epilepsy” is a social construct and a false binary (i.e., one is “epileptic” or not) that refers to a wide spectrum of conditions. People are diagnosed as “epileptic” when they have had “two or more unprovoked seizures,” but the condition can range from those who have 2-3 seizures in their lifetime to those who have a hundred per day. As The Institute of Medicine writes in a report on the prevalence of epilepsy, “the 2.2 million prevalence estimate is most accurately viewed as approximating a midpoint in a wide potential range of 1.3 million to 2.8 million people with epilepsy.” Personally, I have had fewer than ten seizures in my life and it is “controlled” if I make sure to take a prescription, get adequate sleep, and remember to eat. Others have it much worse.
Depending on their severity of their condition, epileptics – like others with medical issues or disabilities – experience a range of challenges that may make life more difficult. These challenges include regular medical appointments, submitting to a range of unpleasant medical tests, and adjusting to new medications. And, of course, that is the condition for those who are privileged enough to have medical coverage. Many Americans and people in the developing world have to cope with epilepsy without the resources of medical care. In addition to the medical side, depending on state laws*, having a seizure can lead to have one’s driver’s license revoked. Outside of major metropolitan areas with extensive public transportation, not having a driver’s license puts you at a major disadvantage in terms of getting to work, picking up groceries, and performing the basic tasks of everyday life. In two different states, I have experienced having my license revoked. Throughout both experiences, I felt great embarrassment for not feeling like full-fledged adult and guilt for having to ask friends for rides all the time. Even though I knew rationally that I shouldn’t feel that way about something that was beyond my control, I did. Because of the practical and social consequences of a loss of license, some epileptics will choose to fight the ban in court, incurring major legal costs.
Finally, beyond the direct medical and legal consequences of being epileptic, there are significant social challenges. As Erving Goffman noted, physical disabilities always bear stigma. To be at risk of seizure means walking around with a sense of vulnerability to a potential failed public performance. In a society where individual control is so prized, to be as profoundly out of control as one is during a seizure carries with it feelings of shame and humiliation. Even well-intentioned people often deliver up negative social sanctions to epileptics. When I was on the job market in graduate school, one faculty member advised me not to mention my epilepsy to anyone (as if I bring it up a lot!), saying, “You don’t want people picturing you flopping around on the floor in the department.” Later, as a faculty member, (after a sleepless night and forgetting to take my medicine and not eating) I had a seizure while advising a student in my office. While I greatly appreciated the kindness shown by my colleagues and the poor student, the sympathy I received for what felt like a public display of mental and bodily weakness was difficult to accept without feeling diminished by pity. Moreover, I think that physical weakness and vulnerability is particularly difficult for men given social expectations of masculine control and physical strength. Stepping out of a basketball game because of an “aura” (the sense of an oncoming seizure) is not just a failed performance; it is a failure to “power through” and properly perform masculinity.
Because of the stigma associated with epilepsy, as Goffman would predict, nearly all of us who are epileptic actively engage in impression management to try to “save face.” To save face, we keep our condition secret if we can, emphasize that it is “controlled,” make self-deprecating seizure jokes, and try to explain how it is beyond our control. Like all emotion work, managing stigma around epilepsy can be exhausting. For people like me who can hide it for years at a time, it is only occasional work. For other epileptics, impression management is full-time work.
To be sure, these circumstances are common among people with many medical conditions. But the complexity of epilepsy and the challenges it poses to people with it are often unseen and may be affecting those close to us.
*In some states, simply having a seizure triggers the loss of a license. In others, it is only having a seizure despite medication. The driving ban can last from 6-12 months.