Home Magazine Gainesville – October 5, 2016
How One Woman Overcame the Isolation of Epilepsy with the Help of the Epilepsy Foundation of Florida
Over 7 billion people populate the world, and over 127,000 of those people live in Gainesville. Yet everyone will still experience loneliness at some point in their lives. For most, this loneliness stems from the idea that no one understands what they are going through and the hardships they are experiencing. The reality is that others can truly understand, and like-minded individuals can help a person realize they are not alone.
Of those 7 billion people, 65 million have been diagnosed with epilepsy, a neurological disease characterized by recurrent seizures. Often people with epilepsy will feel completely and utterly alone at some point, which explains why 50% of epileptics are diagnosed with depression.
I was diagnosed with epilepsy at 16, which later resulted in a downward emotional spiral that is hard to avoid. There is no cure for epilepsy. Instead, we must perform trial and error with medications in order to find the chemical cocktail that will stop or lessen the seizures with the least impact on our bodies. Many of these medications have adverse side effects, such as weight loss or weight gain, intense mood swings, damage to the kidneys and liver, gum disease and tooth loss. We may begin to feel that we have lost complete control of our bodies. We also lose independence, the opportunity to be carefree and the freedom of driving, for fear of triggering a seizure. We look at our peers and family members with envy of the easy-going lives they seem to possess. We begin to long for a “normalcy” that cannot be achieved. Others love and support us, but they don’t truly understand our battle. This is when the loneliness sets in.
Unfortunately, I was unaware for too long of the haven of support and education that is the Epilepsy Foundation of Florida. I felt alone and like an outcast from society when, in reality, people were experiencing the same hardships all around me — One in every 26 people is affected by epilepsy, and one in every ten people have a seizure at some point in their lives. EFOF provides support groups for those affected by epilepsy and for their loved ones in order to gather and share their story.
Shortly after being diagnosed with epilepsy, I quickly realized the lack of epilepsy awareness, seizure recognition and first aid knowledge in our community. Epilepsy is more common than cerebral palsy, autism and multiple sclerosis combined. But because of embarrassment and the social stigma, it is rarely spoken about. The Epilepsy Foundation of Florida vowed to change that 45 years ago, and now so have I.
I want to ensure that those living with epilepsy do not experience the loneliness that I did. I want to ensure that even though there is no cure, at least they know options exist and they are not alone in the fight.
Epilepsy is right in front of you and more importantly, EFOF is right down the street. We are here to provide support groups, camps, medical services, Affordable Healthcare navigation, individualized case management, information and referrals, advocacy and training to our community. No one needs to feel alone. We are strong as individuals, but we are even stronger together.
We may have epilepsy, but epilepsy does not have us.
About the Author
Julianne May Raymond was diagnosed with epilepsy at the age of 16, but has been battling the disease her whole life. She is a firm believer in “everything always happens for a reason,” and always searched to find the reason behind her diagnosis. She then came to the realization that there is a complete lack of epilepsy awareness and decided to “be the voice for those who can’t.” She worked as an advocate and volunteer for years and in July 2016 began working as the Development Associate for the Epilepsy Foundation of Florida.