5 Tips To Navigating Your First Year with Epilepsy

Are you struggling to understand your new norm? Feels like everything is in a spiral with the fear of closing your eyes? You aren’t alone, and it is absolutely normal to feel this way. Navigating epilepsy in your first year is never easy, from learning new medical terms, adapting to a new lifestyle, while trying to have some sense of individuality. You are not alone, and I hope you find this article helpful in your journey.

Finding Out You Have Epilepsy

To start, what is epilepsy? Epilepsy is when someone has more than one seizure in their lifetime. Anyone, no matter gender or race/ethnicity, can get diagnosed with epilepsy. While it is commonly assumed that epilepsy is caused by genetics, the truth is that no one knows what truly causes epilepsy.

5 Tips To Survive

1. Don’t Go Down The Rabbit Hole

When you first hear the news, the world spirals out of control with no solution in sight. In today’s world, it is easier to find everything online because...It’s honestly easier than paying $2,000 for a five-minute appointment. We believe that we can look something up and that solves all of our problems. Yes, it can solve problems, but it can also cause more confusion than when you are looking for answers. While a lot of websites, even WebMD, seem helpful, they often cause more anxiety than relieve it.

2. Research Epilepsy

It’s essential to become your own advocate. Neurologists/epileptologists explain it to you, but sometimes it leaves you more confused than liberated. While yes, they talk to you about and they give you little details, but it’s like if you’re lucky to have a good neurologist or an epileptologist, 98% of time is very vague like in my experience I just heard Epilepsy and seizures like everything else like they didn’t really go into detail they didn’t say anything about type of seizures.

It didn’t say times they didn’t say oh what seizures look like they just said you will have multiple seizures here your medication and call it a day and that’s why you have to be your own advocate because you have to ask the questions that doctors won’t give you the answers for like you have to be the person to stand up for yourself the way that you’re willing to stand up for others.

3. Feel Your Emotions

While trying to get an understanding of your new life, it may feel easier to hide yourself in the room and not come out, but all it does is hurt you more than it does protect you. Whether you're born with it or get a diagnosis later in life, a question of identity always lingers in the back of your mind. Even with the unconditional support from your loved ones, you may feel like you don't want to bother them with your problems, which is normal, especially if you're the only person you know who has epilepsy.

You feel it's a battle only you will understand, and if that is your case, there is nothing wrong with letting your frustrations out. If you do not have anyone to talk to, having a creative outlet does assist in emotional regulation.

4. Practice Self-care

Practicing self-care is absolutely a must when living with epilepsy because the individual needs as much care as the chronic illness. It’s easy to get caught up in the deep dive of understanding epilepsy that we forget to take care of ourselves, for instance, putting on deodorant or not brushing our hair for a week or more, and you use it as well. I was tired of all I’ll do with the next day, taking care of you is essential because to manage epilepsy, you have to take care of yourself. You aren't being selfish if you say no to an event or cancel because of a simple headache. Every headache, every migraine, every anxiety attack you have ever experienced is valid.

5. Keep a Seizure Journal

When you get diagnosed, get a notebook or use your phone to keep track of things like the duration of it, like what you blackout or were you conscious, like the frequency of the seizures, because not only does it become your best friend to understand your Epilepsy journey, it’s your best advocate tool for when you see a neurologist or epileptologist. It also gets you to know your epilepsy a little more and understand when a trigger is coming, when I know an aura is coming, or even when the seizure is coming.