1 in 26
"Girls her age, usually do these things when they are seeking attention" the words coming out of the doctor's lips as my mom stood by my hospital bed gripping my hand worried.
It was another day, another set of …. attacks? I didn’t know what was wrong with me, the doctor couldn’t be bothered to figure out what was wrong, coughing it up to being a cry for attention. My parents were worried out of their minds, as to why on some days they couldn’t wake me up for school. Why would I lose consciousness and wake up feeling like I ran 2 consecutive 10K marathons? Did I die? Was I dying? So many unanswered questions.
Well, 6 doctors later, a misdiagnosis, multiple google searches, a series of tests, and a few bruises, we finally gave the culprit a name… Epilepsy.
Epilepsy is a chronic neurological disorder caused by irregular brain activity, the hallmark of which is recurrent, unprovoked seizures. A seizure is characterized as being unprovoked when it is a result of an unknown or irreversible medical condition. The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is completely unknown. The word “epilepsy" does not indicate anything about the cause of the person's seizures or their severity. Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well.
Although the symptoms of a seizure may affect any part of the body, the electrical events that produce the symptoms occur in the brain. The location of that event, how it spreads, how much of the brain is affected, and how long it lasts all have profound effects. These factors determine the character of a seizure and its impact on the individual. Having seizures and epilepsy can affect one’s safety relationships, work, and other daily activities. However, public perception and treatment of people with epilepsy are often bigger problems than actual seizures.
Persons who suffer from recurrent seizures have long been misunderstood and given false reputations. Many countries still believe that it’s a sign of demon possession and mental instability. The negative connotation associated with the illness causes more harm than the illness itself. Many persons are made to feel that they cannot be a contributing member of society. This is a huge misconception as, like other chronic illnesses, Epilepsy can be treated.
November is Epilepsy Awareness month and like every other horrible disease, the goal is to raise awareness, find funding for research, and provide resources. However, due to the negativity and ignorance that surrounds it; Epilepsy warriors are fighting to End the Stigma.
End the stigma that says
“Because you have epilepsy you cannot go to school”
“Because you have epilepsy you cannot manage responsibility”
“Because you have epilepsy you cannot work”
I spent years not only dealing with the personal struggle that the illness causes, but also unkind treatment from society. As an Epilepsy fighter my goal is to educate, to prevent another teenage girl to be bombarded with comments plagued by ignorance; for the families whose dynamic has shifted; for the strangers on the street to be aware of first aid. 1 in 26 people will be diagnosed with epilepsy and there are 65 million persons currently living with the disease. It is not a rare condition.
I get it, the unknown is scary. But join in the fight to end the stigma. We aren’t insane, incapable, or weak….. We are strong, worthy, and valid. #EndtheStigma
Ashleigh is a recent graduate of the University of the West Indies with a degree in Political Science. She suffers from Epilepsy and as such she has become an advocate for the cause. She is extremely passionate about workplace equity for all and spends her free time relating to her peers on issues of sexism, racism and ageism. She currently works as a digital marketer and uses her platform to create content that spreads awareness of various issues. You can check out more from her at Instagram @ashlerenaee.