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What Student Life Is Like for Me as Someone With Epilepsy

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Being a teenager or a young adult with epilepsy can be difficult. Living with epilepsy can make it difficult to excel in school and keep a positive attitude while doing so.  Please be understanding of others, and if you are a student with epilepsy, please be understanding of yourself. Remember that it’s important to persevere, but it’s just as important to realize when you need to take time to focus on your own well-being. 

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You’re 13 years old. The teacher is asking what you think of the poem the class just read. You have your answer on the tip of your tongue, but you can’t say it. Your mouth won’t open. You liked the poem, but you can’t share your opinion. You’re aware everyone is staring at you, and you can hear your teacher getting angry. You know you’re having an absence seizure, and that it’ll be a few more seconds before you can move. Now it’s too late. The teacher is pointing at the door and telling you to talk to the principal. She says that she’s tired of you not paying attention. As you get up to leave, you say that you’re tired of it, too.

You’re 15 years old, and now the absence seizures are accompanied by tonic-clonic seizures. Your medication makes you so tired all the time. You feel like a zombie. It takes every ounce of energy to get through the day without falling asleep. Part of you wishes you could do more extra-curricular activities, but you’re too tired. On top of the fatigue, the thought of people seeing you falling to the floor, convulsing, foaming at the mouth, is horrifying, so you don’t go to class. You go home to sleep. You no longer care that the school will call your parents to say you weren’t in class. Nothing matters to you other than sleep.

You’re 18 years old, and you’re going off to college soon. You wish you could go to medical school one day. You want to become a neurologist. You know you’re smart enough. Thinking about it makes your eyes brim with tears, so you push it from your mind. You know you may never be the one to find a cure for epilepsy because you need to pick an easier program. No one is telling you that, but you know your brain. You know that stress and sleep deprivation trigger your seizures. You can’t be in a stressful program. You can’t pull all-nighters, like the average student. You can’t be a doctor because working night shifts would be physically impossible for you. You choose a different program. You know it will bore you because it isn’t what you’re passionate about.

You’re 20 years old, and you woke up on the floor this morning. You’d repeatedly hit your head on the hardwood. For the first time in your life, you remember seeing your legs convulsing, and it terrified you. You know immediately that your brain needs a break from the stress of student lifestyle. You feel as though everyone you know is judging you. You don’t want to tell people that you just need to take a year to focus on your health. You feel like people wouldn’t understand because you appear to be healthy. You know you’re loved, and you don’t want to worry the people who care about you, so you make up other reasons to justify dropping out of your program. You have a flashback to when you were 13, and you realize you might always feel as though people are disappointed in your lack of effort, even though you’ve known all this time you have never once lacked effort. 

You realize the first step in focusing on your health is to stop worrying about what other people think, and you finally decide that you are enough.

If you’re a student with epilepsy, my advice is to try your best to stay positive. It’s OK to get upset or frustrated, but don’t be too busy thinking about your limitations to enjoy the life you have. Living with epilepsy makes minimizing stress a big priority for me. Although managing stress can be challenging, reducing my chance of having seizures provides me with extra motivation to relax and give my brain a break when necessary. I know I am the kind of person who, if I was able to, would spend too much time focusing on school, and I would miss out on the little things. A part of me appreciates my diagnosis, as difficult as it can be to live with, because I know my life would not be the same without it. I understand that not all epilepsy is stress-induced, so I encourage anyone with epilepsy to try your best to find your own silver lining.

When I was diagnosed, I wish someone would have told me the importance of telling people about it. To the students with epilepsy, I suggest telling the people you spend time with that you have seizures. As you get older, you may start spending more time with your friends and less time with your parents, especially if you’re going away to college. If you haven’t already, now could be a great time to educate your friends. Explain to them what to expect if you have a seizure, and what they should do if they’re around when it happens. I have had seizures at social functions, and I don’t like to think about what may have happened had my friends not known how to react. If you don’t have a close-knit group of friends you trust, tell your teachers, or roommate, or significant other, or whomever you spend most of your time with.

Epilepsy is a condition that can force you to rely on others, and it can be difficult to accept that when you’re becoming an adult. You may think telling someone about your epilepsy will result in an awkward conversation, but most people I have told have been very interested. In addition, telling the people around you not only helps you to protect yourself, but it can also benefit the epilepsy community as a whole by spreading awareness.

Image via Thinkstock Images

Originally published: September 21, 2016
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