4 Things I Wish I Knew When I Was Diagnosed With Epilepsy

I was diagnosed with epilepsy at the age of 22.

It’s interesting when you’re diagnosed with an incurable and invisible illness that isn’t visible until a seizure occurs.

While most of the time I might look completely fine on the outside, on the inside there is a storm happening in my brain.

The brain controls the body through the nervous system using electrical impulses, and seizures cause a burst of abnormal electrical signals that interrupt normal brain signals. This ultimately disrupts how your body functions, so you could imagine how inconvenient this illness is.

I’ve lost consciousness in public countless times because of a surge of electrical activity that caused many neurons to fire at once, much faster than usual, causing my muscles to stiffen and my entire body to convulse. This is known as a tonic-clonic seizure. There’s nothing like regaining consciousness to someone looking down at you like they’ve seen a ghost.

Oftentimes, I’m on the ground unable to speak for several minutes because my brain decided to short-circuit, leaving on-lookers to wonder: Was it drugs? Is she drunk? Over time I’ve learned how to cope with the reality of having epilepsy, so inside, I laugh, thankful I didn’t take down a grocery display.

I’ve stared off while in mid-conversation with people, forgotten the names of certain people I know well, and have looked like I had just rolled out of bed while at the grocery store.

All jokes aside, an epilepsy diagnosis is a lot to handle, especially jumping right into your 20’s. Here are all of the things I wish I knew sooner.

Treatment can manage seizures:

There is currently no cure for epilepsy, but for the majority of people it can be managed with medication and other treatments such as the Keto Diet, neurostimulation devices (VNS, RNS), and surgery.

Support groups help:

Whether it be locally or online, it can help to know there are other people who have also been impacted by epilepsy and share similar experiences to yours. Connecting with these people can help you figure out how to live life productively with epilepsy, and be a comforting reminder that you’re not alone.

Don’t compare your seizures to what’s on TV and in movies:

When diagnosed with epilepsy, it’s easy to fall into the trap of comparing our seizures to what we see depicted on TV and in movies. However it’s important to remember that these portrayals often sensationalize or inaccurately depict the reality of living with epilepsy. Seizures can manifest in various ways and may not always resemble the dramatic scenes we witness on screen. Each person’s experience with epilepsy is unique, and comparing ourselves to fictionalized representations can lead to unrealistic expectations and unnecessary anxiety.

You can advocate for yourself:

When it comes to your epilepsy, advocating for yourself is an essential part of managing your overall healthcare needs. Advocating for yourself is learning how to speak up for yourself, educating yourself about your illness, and asking questions. Lots of questions.

Takeaway

I never thought I would wind up being diagnosed with a lifelong illness like epilepsy, and yet it happened. At first, I found it difficult to grasp and didn’t understand many aspects of the illness.

Over time, however, I learned how to cope. I learned to find the positive in all of the challenges I faced. I learned that patience can be a valuable asset, and I learned that gratitude is my greatest weapon.

Even though I have tough days, I am so grateful for all I have and for the strong woman this condition has made me. No matter what epilepsy throws your way, with a good support system and a positive mindset, you can rise above anything.

Are there any things that you wish you knew?