08/04/2026
A client recently wrote the following to educate their co-workers on their disability. Epilepsy! Have you ever given it a thought? If you are like me I hadn't really until I met someone living with it. Its not just epilepsy, its any disability or difference.
Epilepsy. My point of view.
Every day 3 people in the uk will die due to epilepsy. 340 to 350 people world wide die due to epilepsy daily, 125,000 people with epilepsy die annualy worldwide. half of these deaths are due to SUDEP, this is a sudden, unexpected, death due to complex, uncontrolled, frequent and or long siezures. Around 1 in 100 people will live with epilepsy, 30% of thoes people will live with uncontrolled epilepsy, the most dangerous kind.
When a siezure happens, the brain missfires, meaning the sufferer can not controll there own breathing, effectively your natural breath intake is temprorarily gone, causing convulsions in the case of tonic-clonic siezires, during the convulsions, eyes might flicker, the face contortes, a scream or cry might be heard at the beginning, but this isn't your typicall scream or cry, it is not an emotive sound, altho its often mistaken for such a noise, it is actually the air in the person's lungs being forced out of there mouth and nose because the respritory system is compromised during a siezure causing momentary lapses in breathing, severely suppressed breathing and or rapid breathing and at times this results in cardiac arrest.
If the sufferer is lucky enough to outlive the siezure, the after effects can last for minits to hours to days. Injurys such as blows to the body, especially the head, bitten cheeks and tounges, carpet burns, are to name but a few, they wake confused, sometimes with no recollection of there own names, identity and that of thoes around them. They may act in a aggressive manner because they are simply confused and scared. Imagine waking up and not knowing who you are or where you are or who is trustworthy. It is petrifying. At times we will wake up and may have soiled and wet ourselves, we loose all ability to controll our bladder and bowls and saliva and are basicly back to being infants, and we must fully rely on thoes around us to keep us safe, as we are unable to. We might shout , cry uncontrollably, lash out, do self injurious behaviours and wander into roads and unsafe areas. After a siezure the body feels like its been hit by a truck, altho agitated and scared, exhaustion kicks in and the sufferer may go into a deep sleep, during this for people with complex epilepsy they need monitoring incase another occurs. Epilepsy can cause brain scarring and injurys and other disabilities due to the effects and stress on the brain, especially in cases of long siezures. This adds more challenges and the brain is damaged and cognitive and emotional changes can occur.
For me i have a number of medications to minimise my siezures, however ive never been stable on the medication and always have siezures regardless, however, without that medication my epilepsy would be debilitating and most probably result in death.
For myself, living with complex epilepsy means living with constant uncertainty. At times i can fear going outside in fear i will fall and have a siezure in the street or the road. My work can suffer due to my siezures and the recovery time, meaning my sick levels can be high. I used to look at my epilepsy as a curse, but instead I now look at it as my reason to grab life with both hands, it gives me a zesty for the life I have right now in this very moment because I can not predict one day to the next, it pushes me to work hard and find enjoyment, whilst I can. Epilepsy pushes me out of bed every day becasue I want to live every day to the fullest and I feel grateful every morning when I wake up. Life's too short to be cruel and unkind to others, we are all diffrent, but we are all just people trying to get by as best we can. I am not just an epileptic, and am a person living alongside epilepsy doing the best I can.²
