Some time ago, I was explaining to a friend why I joined the Hive and how much joy I get from writing and sharing my stories with supportive community. I began reading an old posts about my struggles with illness and the comments you all left. I had forgotten many of them, but reading them made me grateful that people gave me so much kindness and support, and each comment meant the world to me. These memories gave me strength, reminding me that even though I’ve faced so much, I've stayed positive. But there are still days I break down and feel trapped by my condition. Hearing kind words always helps.
Sometimes people think I’m fine because I don't share my deeper struggles. I often feel my problems are insignificant compared to others. A friend once asked why I never talk about my struggles. She insisted it was time to open up, so I did. I confessed my fears about being dependent on medication and others, and my terror of having seizures alone.
People think epilepsy is just seizures, but it’s so much more. It’s the fear, the deja vu, the racing heart, the thoughts that paralyze me. It’s waking up in the middle of the night with strange feelings and memories that aren’t mine. It’s trying to push through each day despite the constant anxiety.
I’m not sharing this for pity. I’m strong enough to accept my epilepsy, but my life is far from easy. Recently, some woman trivialized my condition, saying there are worse diseases. I was speechless. It made me question if I was overreacting about my epilepsy. But I know it’s real, and it’s my struggle to face every day.
For a long time, I didn't know what those experiences meant, and after talking with people who are going through the same thing every day, I finally could understand that I'm not alone and that this is part of epilepsy.
So, I'm sharing this to help you understand what an inner struggle with certain types of epileptic seizures feels like. These experiences are linked to temporal lobe seizures, specifically simple partial and complex partial seizures.
Déjà vu or jamais vu: These are common experiences during temporal lobe seizures. Déjà vu is the feeling that I’ve experienced something before, while jamais vu is the feeling that something familiar is completely new.
Affective symptoms: When I feel emotions that are unusual or very intense, such as fear, joy, or even anger, which seems to be triggered by the environment or thoughts.
Out-of-body experiences: When I feel detached from my body or feel as though I am observing myself from outside my own body.
Memory distortions: When I experience memories that feel foreign, as if they belong to someone else, or I might have vivid, dream-like recollections that don't seem to fit with my life experiences.
Sensory distortions: These can include unusual tastes, smells, sounds, or visual disturbances that aren't actually present in the environment.
I experience this almost every day.
So, maybe this is going to sounds selfish, but listen, WOMAN, I’m dealing with something you’ll never have to face. I have to live with epilepsy my entire life. It’s not curable—pills just suppress the seizures. I always fear having a seizure in the middle of nowhere, all alone. These feelings will be with me forever.
I try to stay positive and not dwell on it, but those thoughts and déjà vu moments always resurface. No matter what I do, they’ll stay. Yes, I can take THC or relaxation pills to help prevent a seizure, but those feelings remain, and they scare me so much. I wish I could be like I was before all this, but I can’t. I’ve accepted it and am doing my best, and I think I’m doing well.
If I don’t talk about my struggles, it doesn’t mean I’m not facing them. I’m fighting my own battles inside. That’s why I’m always ready to help others and listen to their problems. You never know how much it means to have someone listen and try to help. It means the world to me, and I’m always grateful for the support from my family, friends, and you. I'm not alone!
And I’ve found something that helps me. When I start to feel overwhelmed by negative thoughts, I try to write an article in my head, think of new ideas, and plan what pictures would be great for my next post. It takes effort to focus only on this and forget what happened seconds ago, but sometimes it works and pushes away the negativity. If I dwell on the past, it’s hard to escape those thoughts, and then I have to rely on pills, hoping the seizure won’t return.
It’s really hard to explain what’s going on in my head. Even if we only have seizures a few times a year, we never get rid of these feelings and have to learn to live with them for life. So, to the woman who told me epilepsy isn’t serious, she can go mind her own business. Sorry, but it’s true. I’m still mad, but at least I have something to write about! 😊
"You are strong when you know your weaknesses. You are beautiful when you appreciate your flaws. You are wise when you learn from your mistakes." - Unknown
With love, @tinabrezpike❤️