When Will You Emerge from the Epilepsy ‘Closet?’

When Will You Emerge from the Epilepsy ‘Closet?’

Deciding when to open up about the fact that you have epilepsy can be difficult. It is not made any easier by the stigma that has surrounded the disorder since ancient times and, to some extent, still exists today.

And, over the years, my journalist colleagues in the mainstream press have done their bit to reinforce that stigma. 

Epilepsy Society consultant neurologist Sallie Baxendale, MD, spoke at the International League Against Epilepsy neuropsychiatry of epilepsy symposium in London, and said news coverage of epilepsy often reinforces negative attitudes.

She said that a national newspaper headline stating “Epileptic man stabbed his noisy neighbor to death with a fish knife,” unfairly linked the murder to the man’s epilepsy. In another high-profile court case, where a man with epilepsy was found guilty of killing his mother, archaic judicial language associated epilepsy with insanity.

“Too often there is an association between epilepsy, madness and violence which does not help with the stigma attached to the condition,” said Baxendale.

“Alongside this, in the entertainment arena, epilepsy is often over-dramatized with the person falling to the ground and foaming at the mouth. Treatment is always portrayed as an emergency with ambulances and blue flashing lights.”

In the face of this, how can it be surprising to anyone that there is still a stigma attached to having epilepsy? Similarly, for that reason, it cannot be surprising that people with epilepsy often are reluctant to reveal that to others, preferring to stay in the epilepsy “closet.”

I certainly can sympathize with that point of view, as I used to hold it. Being diagnosed with epilepsy in 1972, it became a closely guarded secret shared only with my immediate family, my doctors and my employer.

These days, things have changed. While I still have the disorder, twice daily medication has it totally under control – so much so that it is now more than 40 years since I have had a seizure. As a direct result of this, I have become more relaxed about epilepsy and no longer strive to keep it a secret.

If you have yet to decide when and who to tell, you can obtain advice from your national epilepsy charity. For example, the Epilepsy Society in the UK has published an article headlined telling your employer about your epilepsy.”

Note: Epilepsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epilepsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to epilepsy.

Tagged , , , , .

Ian Franks is our Chief Columnist and Patient Specialist. He enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with Epilepsy in 1972 and MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist Health & Disability website at www.50shadesofsun.com. Besides Epilepsy and MS, Ian is also able to write about cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Leave a Comment