Why Does Epilepsy Have So Few Modern-day Celebrity Champions?

A recurring theme in my book “Sacred Lives: the history, cultural associations and social impact of epilepsy” is the relative invisibility of contemporary “celebrities” to champion their epilepsy and its cause. We should celebrate those who have been prepared to do so but also ask ourselves why their numbers are so depressingly small.  Epilepsy affects 70 million people globally with a systematic review (Neurology January 17, 2017; 88 (3)) suggesting a lifetime prevalence of nearly 8 per 1,000 people. Despite this frequency many potential role models and influencers, who are evidently “out there” and could significantly affect changes in misconceptions and attitudes, remain silent. When searching on the internet for famous people with epilepsy many of the names that come up are from the dim and distant past and have little resonance or reassurance for anyone living with seizures in the present. Also, much of this historical information is inaccurate or just plain wrong. Not surprising given that epilepsy was even more concealed then as now and detailed medical records are absent. Epilepsy is sometimes difficult enough to diagnose face to face let alone from a biography,

What about the here and now? The English Premier Soccer league has a worldwide audience but it is only in the lower soccer divisions that one comes across a player who is prepared to say openly that he has epilepsy. During the 2017- 18 season there were 791 footballers registered to play for the 20 clubs in the English Premier League, and 650 Members of Parliament in the House of Commons at Westminster. However, at the time of writing, I am not aware of any Premier League footballer who has proclaimed their epilepsy, and to my knowledge only two Members of Parliament have done so – both seizure free for years.  A quick search showed that the NFL, comprising 32 teams, had 1,696 registered players and that the two chambers of US Legislature have 535 members. I don’t know how many here have declared and championed epilepsy. I would be interested to know but not surprised if numbers are comparably low.The failure of prominent persons to publicly announce themselves represents a loss of opportunity to diminish negative stereotypes, educate and influence. This same argument applies to those in the music industry, movies, television, and so on and on.

Let’s ask ourselves how this dearth of modern day influencers has come about. It has taken many years for those in the public eye to have become open about their sexuality, mental health and ethnicity. Champions have now emerged, for conditions such as bipolar illness, prostate cancer or diabetes. Each one has helped chip away at negative public attitudes, promote charities, improve patient services and fund-raise for research. Why not for epilepsy? The reason for this paucity of cheerleaders can be summed up in a single word – stigma.  Stigma is a Greek word that historically referred to a type of mark or tattoo that was cut or burned into the skin of criminals, slaves, or traitors. It is now defined as a degrading and debasing attitude through which society discredits a person or group of people because of a particular physical attribute, such as an illness, or because of their racial origin, sexuality, nationality, or religion. It may be directed toward an individual who is perceived as different from the ‘normal’ majority, or toward the friends, family, or associates of that person. There can be little argument that of all long term health conditions epilepsy remains amongst the most heavily stigmatized.

The word “celebrity” conjures up images of reality TV stars but it broadly describes a well-known or prominent person from any walk of life: in essence, an individual with a public persona and image.

There is no reason why celebrities are any less likely to have epilepsy. Also they have the right, as others do, to conceal their diagnosis but perhaps they fear stigma more than most because it may impact negatively upon public image and marketability. Maybe publicists and managers advise against admitting to it for fear of suggesting vulnerability and attracting image-damaging negativity amongst followers and admirers.

Successful people are widely perceived as being in control of their lives. Epilepsy is a hidden disability, characterised by episodic loss of control, thus setting it apart from all other long-term conditions. Embarrassment and shame caused by being ‘out of control’ are accompanied by fear and anxiety about what might have been said or done, during a seizure episode. Being in control of our thoughts and actions is central to our self-image, the image others have of us and the manner in which we and society believe we should behave. Failure to conform to such norms, for whatever reason, is deemed antisocial and dismissed as unacceptable. Several celebrities with visible disabilities have become prominent and well known, with their condition often serving to define them, and received admiration and respect for being what they have become despite the hurdles they have had to confront. Not so those with hidden disabilities such as epilepsy where, between seizures, there are no discernable clues to its presence.

We cannot force prominent people to open up about health conditions such as epilepsy but we can point out to them how great the benefits would be to the epilepsy community at large were they to do so. Perhaps more discussion emanating from articles such as this may encourage them to bring their own epilepsy into the daylight and to let them understand that by not doing so they could be deemed as self-stigmatising. The critical role that celebrities played in the gay rights movement through their “coming out” should be seen as an exemplar.

© 2021 Ian Bone All Rights Reserved

Ian Bone is a retired Neurologist based in Helensburgh Scotland. He’s the author of “Sacred Lives: an account of the history, cultural associations and social impact of epilepsy” Available at Amazon.com. All proceeds to The William Quarrier Scottish Epilepsy Centre.