Around 50 million people worldwide have epilepsy, and it affects the lives of a great many more. Despite this, there is still an overwhelming stigma regarding the disease, and a huge number of people remain ignorant of the many ways in which epilepsy can impact the lives of the people who are afflicted.
In July, we reached out to our followers on Facebook to see what things they wished more people to knew about epilepsy. We were overwhelmed by the amount of responses we got, as well as the emotion and passion with which people spoke of the many misconceptions and difficulties they face on a day to day basis.
From understanding wider impacts that the condition can have on family and friends, to career difficulties – below are some of the most commonly raised points in this area, shared by the people who it affects directly.
One of the most popular grievances for people who have epilepsy is an often overwhelming misconception that epilepsy is just having a ‘fit’.
Epilepsy can present itself through many different symptoms in the people it affects, and these may not be visible.
The exhaustion after having a seizure, and uncertainty of when the next the next one might come, are just two examples of the many ways that the disease can impact day to day life.
Additionally, many people dislike the word ‘fit’ to describe a seizure; however, this varies from person to person.
A lot of the main pain points for people who have epilepsy, or people who are close to someone who suffers from the disease, arise from an overall lack of respect or empathy from others who interact with them.
One such example is understanding how epilepsy can play a massive role in the lives of family, friends and caregivers of the people who have epilepsy.
Alternatively, a frustration that epilepsy sufferers can have is that it is quite difficult for friends and family members to understand that epilepsy can have such a large impact on day to day life.
This is an incredibly hurtful misconception which implies that people with higher I.Q can’t have epilepsy. Not only is this a resoundingly damaging concept, but it is also decidedly false.
In general, epilepsy has no impact on intelligence or the ability to think and learn. Some of the greatest minds, including famous examples such as Isaac Newton, Vincent Van Gogh and Charles Dickens, have been sufferers of epilepsy.
“I was always told I would never achieve much due to having epilepsy. I was discouraged a lot growing up. Being told that things would be too complicated for my brain to understand and that words would to be big for me to understand and that I should focus on following simple career paths. Frustrating really.” – Comment from Facebook
“My son is 27 and has a degree in psychology currently in new Zealand due home soon and going back to do his masters …I worry about him but he’s done so well and we so very proud of him.” – Comment from Facebook
Speak to many people who have little experience about epilepsy, and they will likely have little idea about the real risk that presents itself for people with the disease.
According to the Epilepsy Foundation, the overall risk of dying for a person with epilepsy is around 1.6 to 3 times higher than that for the general population.
Because many people are unaware of this risk, this can lead to decreased respect for people with the condition – and in the worst conditions, cause people to dismiss symptoms of epilepsy due to not taking the disease seriously.
Another common misbelief about epilepsy is the idea that seizures are only triggered by flashing lights.
In reality, this only refers to one form of epilepsy known as photosensitive epilepsy. Photosensitive epilepsy can result in seizures due to visual stimuli which can include flashing lights, repeated or unusual patterns or large amounts of colour.
In a broader sense, other types of epilepsy can be triggered by lack of sleep, stress and even noise in certain cases.
“I take earplugs wherever I go in my handbag, I find the senses can be quite overwhelming for the brain to process, especially all at the same time.” – comment from Facebook
It is important to remember that there are a wide variety of triggers for seizures. Don’t assume that just because someone has epilepsy they will be affected in the same way as someone else with the condition.
“My sister used to have seizures. She collapsed once in our local shopping centre and people were stepping over her saying that she was drunk. She has also had someone steal her purse while in a seizure.” – Comment from Facebook
Do we really need to talk about how horrifying this is?
Epilepsy can impact people in various different ways, but when it comes to work, many employees seem reluctant to employ people with epilepsy.
“Fact is there is not enough help. Epilepsy rules my life – it’s taken everything. My job. I had loads of money saved and that’s gone..I feel I can’t hold down a job and I’m not sure who or where to turn for financial support.” – Facebook comment
For people with epilepsy, or people who want to know more about the law surrounding hiring people with epilepsy, take a look at this informative article by Epilepsy Action.
Understanding that when it comes to illnesses no one’s experience is completely the same may sound like a no-brainer, but for many it is an ongoing struggle.
We have spoken to people from all walks of life who have been affected by epilepsy in some form. A short conversation with someone whose life has been touched by epilepsy is all it takes to realise that no situations are the same.
Some people have strong support networks, others have none. Some people can work, others, sadly cannot. The least that people who are free from this disease can do is find out a little more about the disease and ensure they treat, not just people with epilepsy, but friends and family of people who care for them, with respect.
If you have any points which you feel should be included in this article then please email us at [email protected]
Additionally, join the conversation and let us know your thoughts on Facebook.