By: Annemarie DeChellis
Dr. Ian Bone is a retired neurologist and the author of Sacred Lives: An account of the history, cultural associations, and social impact of epilepsy. Dr. Bone has a son who is battling epilepsy and is working to educate the community and society about epilepsy.
In Natalie Boehm’s interview with Dr. Ian Bone, we are offered a multidimensional perspective on what it is like to encounter epilepsy in everyday life. Dr. Ian Bone has been a consulting neurologist for over 30 years in Scotland, while also caring for his son who is battling epilepsy. Recently, Dr. Bone published Sacred Lives: An account of the history, cultural associations, and social impact of epilepsy (2020). Natalie Boehm is the president and founder of Defeating Epilepsy Foundation as well as a student and mother living with an epilepsy diagnosis. Over the course of their interview, they cover topics from stigmatization, healthcare, managing epilepsy as family, as well as differences between disability services and accommodation in the UK and the United States. They also touch on the often-overlooked positives that epilepsy has to offer, and share suggestions for what people without epilepsy can do to ease the burden for people with epilepsy. Despite the differences in how they came to know epilepsy, Dr. Bone and Natalie find similarities in their stories and experiences, giving their conversation a personal and relatable quality.
One of the most notable topics covered in their interview is how Dr. Bone and Natalie discuss the ways that stigmatization manifests today. Dr. Bone notes that the stigma of epilepsy is more concealed today than it was in the past, and particularly “stigma lurks in areas of education and employment.” While there are disability acts, rules, and regulations in place by legislation, they are difficult to enforce, and many people have difficulties securing a job with an epilepsy diagnosis. Because of this, as Natalie states, “A lot of people here in America stay silent about having epilepsy.” Dr. Bone builds on this stating that “In the situation of epilepsy, if you go into a job having not declared your epilepsy, it’s always on your mind that you might have a seizure in the workplace. And so, it actually puts you in a state of anxiety and makes you vulnerable and makes you more prone [to having a seizure].”
During the interview, Dr. Bone draws attention to two critical issues that arise from stigmatization: the dilemma of deciding whether or not to disclose a disability and the physical and psychological impact of living in a state of fear due to stigma. As Dr. Bone states, “The basis of stigma is fear.” Dr. Bone recalls that prior to his career as a consulting neurologist he witnessed someone have a seizure in public, and onlookers, including himself, reacted with fear. Fear plays a role in the foundation of stigma both for the onlooker and for the individual with epilepsy because stigma heightens the fear of having a seizure in public. Dr. Bone emphasized this point by stressing the amount of “courage it takes for someone to go back to a place where they previously had a seizure.”
Despite the challenges people face, both Natalie and Dr. Bone have found positive attributes that are brought forth by having epilepsy. Dr. Bone remarks that people with epilepsy tend to have routines and regularity within their schedules, which in turn makes them better employees and more reliable. This is not simply a speculation; Dr. Bone recalled a research study that found on average people with epilepsy missed fewer days of work than people without epilepsy. Moreover, from her experience with epilepsy, Natalie says, she has more empathy for others, and is able to teach her children how to advocate for themselves, set goals to remove fear, and prepare for future events.
Dr. Bone’s Suggestions for People without Epilepsy
Directed towards people without epilepsy, Dr. Bone discusses the importance of understanding the condition, and understanding that people with epilepsy are no different than anybody else, until they have an attack. The fear of the attack is what stigmatizes people. By doing what you can to learn about the condition, you can remove the fear associated with seizures, thus reducing some of the effects of stigmatization.
Natalie and Dr. Bone also spend some time discussing the role that celebrities and well-known people can play in epilepsy advocacy. Despite epilepsy being a common ailment, very few celebrities have publicly discussed their battle with epilepsy. When celebrities choose to stay silent about their epilepsy diagnosis, it is “self-discriminating.” Dr. Bone remarks,“If a Hollywood A-list celebrity stood up and said ‘I have epilepsy’— what a change that could bring about.”
Closing their conversation, Dr. Bone touches on COVID-19 and the risks of isolation on mental health. While the toll isolation exerts applies to the entire population, Dr. Bone notes that people with epilepsy are more susceptible to the social consequences of COVID-19 because the resources in place to provide social connections and activities for the epilepsy community are put on hold to reduce the spread of the virus. It is important to reach out those with epilepsy more now than ever given the risks isolation imposes on mental health.
The information covered in this article does not account for the full scope of information and stories shared in Natalie’s interview with Dr. Bone. The interview can be viewed in its entirety on YouTube: Meet the Contributors: Dr. Bone