5 Lessons I Have Learned Living With Epilepsy

I wasn’t given a choice in having epilepsy but I did have a choice in how I dealt with it.

I didn’t anticipate becoming chronically ill. I wasn’t prepared for my brain to seize unpredictably or certain aspects of taking care of myself coming to a screeching halt… but it did. Overnight, my life changed.

I was diagnosed with epilepsy in 2008. Having no prior knowledge of this illness or what it meant to even have a chronic illness, It was as though the doctor was speaking to me in a foreign language.

I couldn’t find a single person to talk to who also had this illness. It was evident that I had a very long journey in front of me. Learning, adapting and looking ahead.

Life with a chronic illness can sometimes be confusing and challenging. Pursue it with a willingness to learn and grow.

Here are a few things I learned that might help you:

1. “Freaking Out” Is Okay – Especially Initially

After being handed my epilepsy diagnosis, I was abruptly made aware that I would need to acclimate to adjustments and limitations. Certain activities and tasks that I could do on my own were suspended for my protection. I was freaking out in sadness, confusion and anger.

But ultimately, I began to understand that this would not get me anywhere. Freaking out would put me in a bad state of mind and would not help me accomplish anything, restore or improve my life.

Be patient with yourself. Take time to acknowledge and accept your emotions, then focus on developing an action-plan to manage the condition, improving your emotional response over time.

2.  My Health Is In My Hands Too

I was just diagnosed with epilepsy. Where do I go from here?

Having a good care team is essential in finding the medication, therapeutic options, and supportive resources that you need.

Arranging this should be a top priority.

If the doctor/patient relationship isn’t working out, we have every right to move on.

As timid as I was at first, I’m no longer afraid to hire a doctor or fire them, if need be. Establishing great communication and trust with a doctor is one the most important components of ongoing care.

Currently, I have a neurologist who has exceeded my expectations in numerous ways. From day one, he made me feel seen, heard and validated.

Searching for a doctor that’s right for you and your needs/expectations? Visit healthgrades.com.

3.  What Is Lost Can Be Replaced Twofold

I found myself fixated on things that I would no longer be able to take part in and the friends who faded away not long after learning of my diagnosis. It felt like I lost just about everything.

It was hard to see what my future held but I kept pressing forward, although feeling empty, depleted and lacking hope… Onto what would ultimately be my mission and calling.

Emerging as an epilepsy advocate, blogger and the founder of The Epilepsy Network (TEN).

The vacant spot where my friends once resided was replaced by really solid friends that were supportive, encouraging, and present, even if they weren’t physically present. Many who could ‘get me’ as they too were impacted by epilepsy and other chronic illnesses.

I gained more than I could have possibly imagined, and then some.

I learned that when things are removed from our lives, sometimes it’s to make room for what we need and for what’s truly meant for us.

4.  Asking For (or Accepting) Help Is Not An Indication Of Weakness

Realizing that I would need to ask-for and accept help to do certain things that I used to be able to do on my own… like hopping in the car and going shopping or preparing meals, should I have a seizure, was like a punch to the gut right out the gate.

I felt like asking for help made me a burden. I felt like it made me weak.

I find it freeing to know, how I feel isn’t ‘how’ or ‘who I am’.

Asking for help is an indication of humanness, not weakness.

5.  Self-Care Is Not A Selfish Act

Let’s clear up one common misconception: Self-care isn’t equivalent to self-indulgence or being selfish.

It’s necessary.

It’s creating the time and space to put yourself first, when you need to. It’s being attuned to what you need in order to function at the greatest level of health.

Living with epilepsy, I can never tell when a seizure will strike. Not only can it be physically exhausting but mentally and emotionally too.

Sometimes I have to cancel plans in order to recover or if I just don’t feel right. Then there are occasions that just call for “ME” time.

“ME” time is important for us to relieve ourselves of the daily stress that goes with having a chronic illness.

4 of my favorite “ME” time activities:

• Watching a funny movie / tv show
• Listening to music
• Taking a social media break
• Eating a yummy snack

What are some of your favorite “ME” time activities?

I’ve lived with epilepsy for almost 14 years and I’m still learning ways to navigate the choppy waters. It’s my belief that we never stop growing as we’re going.

Life with a chronic illness can sometimes be confusing and challenging. Pursue it with a willingness to learn and grow.