Epilepsy is a neurological disorder that can affect people of all ages, and is one of the most unpredictable disorders out there. This post is about raising awareness about epilepsy, which is often misunderstood by many. My mother has suffered with the condition for several years and as a result, has been unable to work anymore. Seeing her suffer with the illness has been difficult, but what is even worse is that many people she has encountered don’t even consider epilepsy to be a ‘real’ illness. The government has ruled that she is not ‘disabled’ enough to be off work which has motivated me to write this piece and let people know what dealing with epilepsy is really like.
It is true that people with epilepsy can live a fully functional life. There are obvious restrictions due to the seizure aspect of the condition, but most people living with epilepsy can do normal day to day activities. However, people suffering with the illness can be both a danger to themselves and others. There are a wide range of symptoms that stem from epilepsy including violent shaking, grinding of the teeth and biting of the tongue, and each person’s epilepsy can be different. In my mother’s case, she is unaware that she is having a seizure until she comes around, but when I suffered with the illness when I was younger, I was able to feel my seizures coming and was able to alert someone for help. A person can have a seizure whilst at work and put others at risk in environments such a catering or retail. This is because during a seizure, the brain can actually still process information. For example, my mother will wake up in the morning and turn on the kettle to make tea. She has a seizure whilst doing this, yet her mind is still processing her intention so she picks up the kettle and pours out the water. The problem is she has poured this water on her foot instead of into the cup, and even after doing this, she puts the kettle back on the base and heads to the living room to sit down as if she is going to watch the TV. Not until my mother comes out of the seizure does she feel the pain of her scolded foot. Others that suffer from epilepsy are unable to control their bladder during a seizure and most are unable to respond verbally.
These symptoms of epilepsy make it difficult for sufferers to maintain consistent employment as many companies would rather not take the risk. In addition to this, because epilepsy is such a spectrum condition a lot of people won’t know how to deal with a person that is having a seizure. Growing up in a household where my mother has seizures regularly, I have adapted my lifestyle to accommodate this. I sleep very lightly so I can hear if she falls over or knocks something down. I try to keep her eyes focused on me and keep talking to her about familiar things to try and bring her around faster. In cases where I’m unable to move her, I lay with her where she is and just let her know that I’m there and it will be over soon. This is only when I’m around. When my mother is on her own and has a seizure, the only way she knows is if she has made a mess or has hurt herself in some way.
Seeing someone have an epileptic fit is not easy let alone dealing with it on a regular basis. People should bare in mind that despite being able to live a fully functioning life, it is not fair to not see this condition as a serious one. People should not be forced to work knowing that stress can actually make their condition even worse and it’s families and friends behind the scenes that have to deal with the aftermath.
I came across a tweet by a young woman named Siobhan recently about her epilepsy and I wanted to feature her story to give people another insight into what it’s like living with the condition. Siobhan was diagnosed with epilepsy at the age of 10. Even though she has come to terms with her condition, she has observed that her mood fluctuates between good and bad when not on her medication. In addition to this, and a common restriction for those that suffer with epilepsy is that Siobhan is unable to drive. Driving is not allowed for 6 months after a seizure which makes it near impossible for those that have then regularly to become a road user. Her mother also suffered with epilepsy but grew out of the illness. Siobhan wonders that if doctors took more time to understand her condition before placing her on medication, would she have grown out of hers too.
There will always be misconceptions about epilepsy, but being someone that experiences’ it first hand, I felt that it was important to talk about on my space.
T K Williams-Nelson
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