Epilepsy in the UK: FAQ’s

For over a half of a million people living in the UK, epilepsy is not simply an abstract condition but a very real everyday fact of life.

While for the most part those living with the condition are free to go about their lives in very much the same way as everyone else, there still exists a stigma and several misconceptions surrounding life with the condition. As these misconceptions can at times lead to serious implications and dangers, addressing them and providing the correct information is paramount as it could potentially mean the difference between life and death, within the confines of the most serious situations.

So to address the most commonly heard questions and open a dialogue with the purpose of better understanding the condition and those that live with epilepsy every day, let us take a look at some of the more commonly heard misconceptions and questions asked when the topic of epilepsy in the UK is brought up.

Is epilepsy rare? I don’t see or know many people that live with the condition

Epilepsy Injury

Epilepsy Injury

While epilepsy can be considered uncommon, it is certainly not a rare occurrence. Over half of a million people living in the UK live with epilepsy, so while it may not be spoken about often or garner the appropriate attention it deserves, epilepsy is quite prevalent throughout our society.

As for not seeing or knowing many people that live with the condition, the answer is quite simple. Unless someone was actively experiencing a tonic clonic epilepsy induced seizure there would be virtually no way of recognising that a person lives with the condition. That said, even if a person is actively experiencing a seizure, determining the cause as epilepsy is still practically impossible without proper medical attention and testing.

As many people still regard living with epilepsy as a stigma, many people who live with the condition are unwilling to openly discuss it, though as the dialogue surrounding life with epilepsy becomes more open and informed, this should become easier.

Do people who live epilepsy still work?

Of course, just like everyone else in our society, people living with epilepsy can still pursue their career goals and find meaningful successes within the work place. Though for some this means needing a little extra accommodation and consideration as sometimes life with epilepsy still comes with several inherent risks and potential dangers, namely that of suffering an injury while experiencing an epilepsy induced seizure.

In fact, it is actually illegal for any employer to dismiss a person or refuse employment to a person based upon their neurological condition. Protected under the Equality Act of 2010, people living with epilepsy are still afforded the right to pursue their aspirations even if that requires employers make a few reasonable accommodations.

Does someone living with epilepsy always experience epilepsy induced seizures?

No, not at all. In fact a majority of people living with epilepsy have their condition completely under control, meaning they don’t experience any type of epilepsy induced seizure, or that the risk is extremely low.

Of those who still experience an epilepsy induced seizure, the commonly held perception of what a seizure is, does not fit the symptoms of their individual experiences with the condition.
While the image of an unconscious person, violently convulsing on the ground is, unfortunately, the image the public associates with the condition, that picture couldn’t be further from the truth for most people with epilepsy.

While tonic clonic seizures, as they are formally referred to, are not unheard of and certainly a very real situation for some people living with the condition, they are not the only way symptoms present themselves.

The truth is that while violent convulsions are the most widely known type of epilepsy induced seizure, with little regard to their actual prevalence, there are numerous ways symptoms may present themselves. In fact there are over forty different types of seizures alone and depending on the individual person, some never occur as part of living with the condition.

Though recognising this and moving beyond the stereotypical, and incorrect, image of what an epilepsy induced seizure is will help reduce the stigma associated with the condition and allow a more honest talk about the condition.

Should a person who is experiencing an epilepsy induced seizure be restrained or held down?

Unfortunately this is the most dangerous of all of the incorrectly held beliefs and assumptions concerning the condition. In no way, should a person who is experiencing an epilepsy induced seizure, or any type of seizure be restrained or held down, doing so could possibly lead to unnecessary harm and injury.

If possible you should help the person to the floor gently if they are standing at the time of their seizure. If you can place a jumper or something soft under their head if the surface is hard, and make sure if at all possible the area is clear of hazards that they may injure themselves on, or try to protect them from surrounding hazards.

If you can do so and without using force, safely turn them onto their side so that any fluids can leak from their mouth to avoid a choking risk.

Certainly under no circumstances should anything be placed inside the mouth of a person experiencing a seizure of any type, as the possibility of accidental choking is very present during the situation.

Links that could help you

NHS Epilepsy