What’s it like to have epilepsy?

What is it like to live with a chronic illness? Chronic sounds too dire, and I never thought I had one until I Googled “list of chronic illnesses.”

What do I have? I have epilepsy, and it’s classified as a chronic illness.

I’ve been living with epilepsy for almost a decade now, and it wasn’t easy at first.

Life with Epilepsy

I was diagnosed at 17 years old and drastic changes happened from then on. From being the third in the batch to dropping down to 11th. I recall my annoying classmate say “You’ve dropped down from the class rankings really low.” and she was smiling as she said it. She was the perfect example of schadenfreude or finding happiness in the misery of others.

But that scenario doesn’t even tell the whole story of having epilepsy!

1. You’re taking maintenance medicine at a young age.

I started taking maintenance meds at 17 years old. I compared myself to my dad who was taking maintenance meds for his heart… but he was in his mid 40s, while I was in my teenage years.

And if that wasn’t enough, in the past decade, I’ve changed meds thrice because the previous meds weren’t effective (for me). One medicine caused me to have bad, black, dry pimples. I’m not even sure if they were pimples, but my neurologist prescribed antibiotics, and they disappeared (leaving scars behind). Another medicine caused me to be mentally slow. I may not have an IQ of 130 and above, but I know I’m not stupid. Proof? I got accepted in one of the prestigious universities in the country. Getting in that university is not a good basis for intelligence, but it’s a proof that I’m not stupid.

2. You’re misunderstood, and people think you’re stupid and crazy.

Having a neurological disorder may be one of the most difficult medical conditions one can have. It not only affects you physically, but mentally and socially as well.

I had a friend who treated me like an idiot, and to be honest it was offensive. We studied in the same elementary school and the same prestigious university, but she still treated me like I was slow and stupid. Thankfully, my neurologist changed my meds because it wasn’t working for me.

Another awful instance was when a relative, my grandmother’s sister, said I was crazy. It wasn’t the first time I was perceived as “crazy.” Back in high school, a classmate drew the whole class with a character representation of each student. You know how she drew me? A crazy girl with an IV.

3. Your family (and maybe friends) will coddle you.

Ever since I got diagnosed, my parents became extra protective. When I got out of the hospital, my dad started bringing me to school while my mom fetched me after school.

In college, I had a military dog tag and wrist band with my medical information, but it’s not like I wore them together. I used the dog tag when I was in the university and used the wrist band when I started working.

4. You’re never alone.

This is related to #3. In my first year of college, my sister had to pause her own life to live with me in the dormitory! Luckily, after a year, I was able to transfer to a nearer university branch. That branch was close to my dad’s office, so we went home together. I always needed someone to be with me in case I have a seizure episode. It’s not like I wanted it that way, it’s how my parents wanted it for my safety.

5. You’re worried about not getting accepted at work.

I never worried about not being able to work because of my medical condition, but I have read that some people with epilepsy are not able to work. I’m lucky that the type of epilepsy I have still allows me to work outside from home.

But there’s still the fear of not getting accepted because of it. Because no matter how perfect I am for the job, if they knew about my medical condition from the beginning, they would reconsider accepting me. So… I never told the interviewers of my medical condition until I got accepted and signed the contract.

6. You live life with limits.

YOLO. You only live once, I know that. You know that. But when you have epilepsy, it becomes different. There are many things you have to avoid like alcohol, strobe lights, being alone in a foreign place, sleeping late, swimming, or playing contact sports. Yes, I had to quit playing volleyball because of this condition.

7. Anything can happen anytime, anywhere.

I’ve had seizure episodes during a university-wide Christmas event, a vacation in Hong Kong Disneyland, the playground in the school where I taught. Hmm… Where else?

8. You fear that you won’t get accepted, socially.

I withdrew from people. I only had my family and best friend who stuck with me. However, as I grew to accept reality, I opened up to having “new friends.” I may not have many friends, but I’m sure the ones I have are great!

9. You feel hopeless at times (or most of the time).

“Just a year of being seizure-free, and you’re good.” – That’s what my neurologist always told me. Every year, I’d write “healing” on my New Year Goals, and every year I’d fail. My condition now is way better than it was before. These days, I just have auras (or physical warning that I may have a seizure episode in the next few seconds), and not convulsive seizure attacks.

People would assume that because I’ve had this for years, recuperating from an episode would be easier, but they’re wrong. Physically, yes, I’m used to the pins and needles in my brains, but emotionally, no. I think no matter how many years you’ve had epilepsy or no matter how many times you’ve had seizure attacks, you’ll always feel hopeless. That’s not me talking out of self-pity, but it’s the truth.

10. Money that you can spend for luxury ends up being money for medicine.

It’s a monthly recurring expense. I remember a time when someone I know bought the latest iPhone, and I was envious. I wasn’t envious at her new phone, I was envious because she had the extra money to spend on something luxurious like an iPhone.

On Living A Normal Life

Despite everything, you try your best to live a normal life. Lissa Rankin’s TEDx Talks and book Mind Over Medicine taught me that sometimes the best way to live a normal life is to not dwell on your illness.

People with medical conditions tend to focus too much on the fact that they’re ill. What they don’t realize is that the more they think about it, the more they prevent healing. Our minds have the ability to make us feel better if we know how to control it.

What’s it like to have epilepsy?
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