I Am Struggling With My Epilepsy Diagnosis Today — and That's OK

My name is Nikki, and I’m currently struggling.

That’s the first time I’ve ever wrote that out. In today’s society, even if people know about your condition, they don’t always want to hear about the times when you don’t want to get of bed, or when you can’t control your bodily functions, or when you’re angry at the world. They like to congratulate you on “dealing with it so well” without wanting to know the details or call you a “hero” for living your life.

We need to change that. An illness or disability may not necessarily be wanted, asked for or enjoyed, but that doesn’t mean we can’t live hugely exciting, fulfilling lives that may be better because of all the things we’ve learned through our diagnoses.

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I have primary idiopathic generalised epilepsy. That all means I have grand mal seizures regularly, and I’ve had a few partials. I was diagnosed at 18, and I take a chemist full of medications to try and control them. My family care for and challenge me every day, my friends encourage me to take on the world, and for the most part, I’ve lived my life well since being diagnosed. I’ve graduated from University, got a career, gone on holidays, and I get to be really involved in my niece’s life. In general, I’m happy.

But I also have things to deal with like side-effects of medications, ignorance from others and epilepsy challenging my future plans. I feel like I’m expected to deal with this by concentrating on the good parts, by showing the world a happy face that is grateful for the fact that I can study or work or have a family and friends group that is second to none.

I don’t feel grateful today. Today I feel angry that I have epilepsy and that one night out with friends has caused two seizures in two days. Today I feel unattractive because the medication I take is making me lose my hair and gain weight. Today I feel guilty that the people around me have to deal with some part of the epilepsy. Today I feel jealous that I can’t run away from the epilepsy when it gets too much.

And I’m beginning to realize that’s OK.

It’s OK for me to say, “Today was horrible.” It’s OK for me to be angry or upset. Feeling bad won’t stop seizures from coming, but having this condition shouldn’t mean I get cut off from a range of emotions. I am entitled to be upset when I have to cancel my plans through no fault of my own, for example. I shouldn’t have to hear, “At least it wasn’t three seizures,” and somehow feel grateful that it was only two. I think sometimes we worry too much about being that person people pity or about being a “whiner.” But a wise friend once told me to own my emotions. I grappled with what that meant a lot before I realized it was simple. Never discount, ignore or hide an emotion. Sometimes the only way to get to that happy place is to look around and accept that the place you’re in right now makes you mad.

I’m Nikki, and today, I’m struggling.

For anyone else having a bad day, too, my advice is that everything is temporary. We all have bad days, including those who don’t have epilepsy, and we all have good days. Today may be a bad day, but tomorrow may be the best day so far.

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