Epilepsy can intrude into anyone’s life, at any time. Millions of men, women and children battle this selfish and at times difficult condition every single day. All of us diagnosed are on the same journey with different stories to tell. Pages continuously being written of our challenges and victories. Our setbacks and comebacks.
I spoke with community members on The Epilepsy Network (TEN) and Rise Above Epilepsy Facebook pages and asked them to share what they would like others to know. Here is what they had to say:
Your Support, Understanding, and Compassion Matters
Having epilepsy doesn’t make us “weird” or “less intelligent” people. We are still normal humans with our own different skills.Mandy Krzywonski
I don’t always need words. Sometimes a hug helps more than anything.Carissa Yeater
As I continue to recover from major brain surgery, I’m no different than the next person.Matt Conneally
I know you want to support me and honestly I do love you. I love your support. You’re my rock but I just need some time to gather myself.David Bezer
Having epilepsy is a challenge, a continuous challenge at that which makes me know that I can overcome any other challenge that is thrown my way too.Craig Fairclough
You being here means a lot to me.Marika L.
Epilepsy can take away my independence, but having a great support structure of family, friends and doctors makes it easier to accept and still be as active and functional as possible.Azeezah S.
My seizures are not easier because they are more subtle, sometimes that makes it harder because it took me my entire life to be diagnosed. Please don’t treat me differently or be afraid of how to deal with my seizure. I’m still the loud silly social butterfly you know and love.Tui S.
Having Epilepsy does not mean you can’t be a productive member of society!Doug H.
Looks Can Be Deceiving
A person may look like they’re staring off as if they may be daydreaming but they could be having a seizure. Chris Kairos
Not everyone seizes the same. What my tonic clonic seizures look like could be very different from what someone else’s looks like. Adrian Sloane Williams
Not all symptoms of seizures are the same for everyone with epilepsy. Amber S.
It Affects Us More Than Just Seizures
We are often left in physical pain from injuries caused during seizures. Many of us also experience anxiety, depression and live with the side effects of medications. Dave M.
Trying to stay positive if you’ve had epilepsy as long as I have, 18 years, is difficult. But it can always be done. Sarah D.
The medication dulls my brain to the point where I’m only slightly useful, only slightly able. Laura E.
It affects my memory. I find it so hard to remember even the simplest things which aren’t ideal when you’re trying to get through college. Elisha O.
It Has No Regard For Age
Epilepsy can occur at any age. Some people grow out of their epilepsy and some don’t. I had my first seizure when I was 13 years old and wasn’t diagnosed until I was 18 years old when my seizures actually started getting worse.
I’m a single mom of an 11 year old boy and it affects me very much. I can’t drive my son to places, I constantly have to find rides, I’m unable to work, I worry about income. It’s crazy. But the good thing is, I have the support of my family, friends and support groups to help me get through everything. Malorie Lopez
I’ve had epilepsy since I was 4. I wasn’t diagnosed until I was 17 years old when I had a grand mal seizure.
I had gone through various neurologists as well as gone through every test (EEG, MRI, Spinal Tap, etc.) but each test came back normal. Doctors were baffled. They had misdiagnosed me with everything from migraines to looking for attention. Joseph Laxamana
I am 62 years old, and was diagnosed with epilepsy around age 36. I had complex partial seizures where I almost blacked out and when I returned I felt as if I’d walked into the gates of hell. I was a new mother and holding my son during my first seizure.Cathy Chester
There Is No Cure
Epilepsy may be managed, but there is NO cure!Teresa Stallone
There is no cure for epilepsy. Just treatments. Whether it be medication, diets, implants, surgery, etc. We all need to try different treatments to see what will work to help us control our seizures.Joseph Laxamana