What author and neurologist Ian Bone wants people to understand about epilepsy

Epilepsy is a common but much maligned, misunderstood and stigmatised condition. The World Health Organisation estimates that 50 million people worldwide live with it and yet, to the general public, it remains feared and attracts less empathy than it should.

Those with epilepsy often conceal it from all but their closest confidante and because scarcely any celebrity, or person in the public eye, will admit to having it the epilepsy community is deprived of its much-needed role models.

It is the unpredictable and repeated, albeit short-lived, loss of self-control which accompanies seizures that sets epilepsy apart from other long-term conditions. The emotions that are experienced after a seizure can include guilt, loss of confidence and low mood. Being in control of our thoughts and actions is central to our self-image and the manner in which we and society believe we should behave. Failure to conform to such norms is deemed antisocial and dismissed as unacceptable. An appreciation of this is central to understanding people with epilepsy and their public perception.

In ancient times, persons with epilepsy were considered to have unique powers, even hailed as geniuses

My credentials for writing about epilepsy are firstly as a father of a child, now adult, who lives with it and secondly as a neurologist whose work frequently involved its diagnosis and treatment. This unusual set of circumstances allowed me to see epilepsy from each side of the fence and appreciate that, despite considerable medical advances, the lack of social acceptance prevails. In my job, I came across many for whom life opportunities, even when seizures were medically controlled, were diminished.

My professional observations were mirrored by personal experience of how legal regulations, uninformed attitudes and perceptions negatively impacted my own family. Sacred Lives was written to bring epilepsy out of these shadows and inform a readership that those with the condition are no different from others. In ancient times, persons with epilepsy were considered to have unique powers, even hailed as geniuses, regarded as having a sacred disease and leading sacred lives. It is from this historical belief that the title of the book is taken.

The initial chapters describe the history of epilepsy from its earliest recognition, 4,000 years ago, to the present day. The book outlines the early myths and mystique that led to persecution, demonisation, incarceration and social rejection. It is only by the 19th century that epilepsy becomes accepted by physicians as a physical condition and not a manifestation of madness or the result of contagion.

Many historical people, including Napoleon, are claimed to have epilepsy

The first pioneers of scientific advancement are described, along with the often serendipitous discovery of effective drug and surgical treatments. Social reform was slow, and only in the early 20th century did a compassionate approach emerge, as evidenced by the removal of people with epilepsy from prisons and poor houses to rural colonies and hospitals. Along with this were the beginnings of the charitable movement.

I also address epilepsy’s portrayal in literature and paintings, in the cinema and on television, in music and the theatre, in newsprint and on social media along with the lives of those writers, painters, musicians and actors with epilepsy. I’m interested in how they managed their condition and its impact upon their art. Many historically famous people, such as Napoleon Bonaparte, are claimed to have had epilepsy. I reviewed the available medical histories to confirm or refute their diagnosis. The absence of their voices does much to perpetuate public belief that success and epilepsy cannot go hand in hand.

The book also deals with the social consequences of having epilepsy. No other condition has been so heavily legislated against with respect to employment, marriage, migration, travel and driving. We look at each of these from a historical and global perspective. For centuries epilepsy has been mistakenly associated with criminality and antisocial behaviour. The evidence for this is reviewed.

Notorious court cases are described and the notions of criminal tendency, violent behaviour and the so called “epileptic personality” are discounted. We review how educators, law enforcers, employers and carers regard the condition and ask why. Public information strategies and the appropriate use of social media to reduce stigma are discussed along with their effectiveness.

My book closes with a personal account on living with epilepsy, as the parent, taking the reader from diagnosis in childhood through to the pitfalls of adolescence and early adult life.

The purpose of Sacred Lives is to enhance the public’s understanding and thereby improve the quality of life of those with epilepsy.

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