I was 7 years old when I first had a seizure in school. My doctors told me that this didn’t always mean that a person had epilepsy, but, after having a cluster of 3 seizures just after lunch one day, I went on to have an EEG and MRI, the results of which led to my doctors diagnosing me with epilepsy. They diagnosed me with a rare form of Reflex epilepsy known as Eating Epilepsy.

Epilepsy Jo is the woman sitting where I was sitting; from the moment a seizure starts to the moment it ends. It’s Epilepsy Jo who during a seizure picks at her clothes, fiddles with anything within reach, raises her eyebrows, and smacks her lips. It’s Epilepsy Jo who, as a seizure starts, makes a guttural noise like (really terrible) Mongolian throat singing.

Studies of those with epilepsy in the US have shown that about a third of people with focal seizures suffer from anxiety disorders and that depression is 4-7 times more common in those with epilepsy. Another US study showed that people with epilepsy are at a 22% higher risk of suicide that the general population

Seizure freedom is a funny thing, from the moment you are told by your doctor “you have epilepsy“ it becomes the ultimate goal. But what does seizure freedom really feel like? Is it the ultimate goal? Does life just return to normal? I hate to shatter the dream but unfortunately, it’s not quite that easy.