The last week of May was National Epilepsy Awareness Week in the United Kingdom. The internet and UK-based newspapers were filled with articles showcasing the need for increased epilepsy awareness. They included an Uckfield man found by a passerby who called an ambulance unnecessarily. A Lancashire man whose mental health spiraled after he was diagnosed with epilepsy and had to surrender his driver’s license, critical to his career as a truck driver. There were multiple accounts of British Parliament and Irish Legislative Assembly members proudly donning Epilepsy Action pins, showcasing the U.K.-based nonprofit focused on increasing epilepsy awareness.
But the week’s most compelling story was one about 35-year-old Even Allen, from Rotherham, England. In 2021, Allen was on the bus in Sheffield when a seizure started. The bus driver mistook Allen’s slurred words and unsteadiness for signs of alcohol or drug use. “The bus driver physically manhandled me off the bus and left me at a bus stop, which was incredibly traumatic for me,” Allen said. The bus driver’s response could also have been life threatening.
As part of National Epilepsy Awareness Week Epilepsy Action promoted their CARE campaign last month, a name based on an acronym they created to teach people how to assist those in the throes of a seizure.
- C – Comfort – Cushion their head with something soft, and keep them comfortable
- A – Action – Time the seizure and clear the area of anything that might be harmful
- R – Reassure – When the seizure has stopped, stay with them, and reassure them as they recover
- E – Emergency care, when needed
Emergency care is only necessary if the seizure continues for more than five minutes, or the person remains unconscious, has multiple continuous seizures, or has trouble breathing after the seizure. Emergency care is also required if the person has never had a seizure before.
During National Epilepsy Awareness Week, there were multiple stories about Epilepsy’s Action’s CARE campaign, including Even Allen’s, although the incident occurred two years prior. “I didn’t have any means of communicating that I needed help,” Allen told BBC Radio. “Were [the CARE] campaign around at the time, somebody on the bus may have had the confidence to come to my aid rather than judge me or made feel I was a burden.”
Epilepsy Action recently surveyed over 200 people with epilepsy and found more than half had avoided public places due to fear of having a seizure and experiencing stigma or misunderstanding. They also found 47% of respondents had been mistakenly accused of being drunk or on drugs in public.
In the U.K., Epilepsy Action and other similar nonprofits hold several awareness events like National Epilepsy Awareness Week. In America, November is Epilepsy Awareness Month, and the Epilepsy Foundation of America has 49 chapters across the country that host multiple fundraising and awareness events. I am grateful these organizations exist and persist with their missions.
I’m also frustrated by society’s lack of empathy and awareness despite these efforts. Allen was thrown off the bus for having a seizure. The driver mistook the seizure for drunken behavior. His response was prompted largely by fear. In the past year, I’ve blogged about people with epilepsy—including myself—being banned from the health club, jobs, and the movie theater due to seizures. By law, people with epilepsy should have access to the same resources and opportunities as everybody else. In practice, if an onlooker’s fears are triggered, they are more likely to respond inappropriately, as the Sheffield bus driver did. While I know seizures are scary to witness, barring people with epilepsy from places and activities is not the solution.
When those of us with epilepsy seek our neurologists’ advice, we frequently discuss our seizure triggers. They vary from person to person, but common ones include stress, poor sleep, and low blood sugar. Avoiding seizure triggers is conventional wisdom among people with epilepsy and their practitioners. Society needs to achieve the same level of conventional wisdom about what epilepsy is and is not, and what seizures and an appropriate response to them look like. Epilepsy Action’s CARE campaign is an important step in the right direction. But based on the epilepsy stories I read regularly I know stigmatization continues. We’ve got a long way to go before seizures don’t trigger others’ fears.