The 6 'Ugly' Sides of Epilepsy Most People Don't Like Talking About

It’s no secret that having a chronic illness sucks. There are sides to having epilepsy that are “ugly” or not well studied, and many people don’t know about them at all. Yes, there are still myths — and I’m not talking about things like placing an object in the mouth of someone having a seizure. Having lived with epilepsy for over a decade and going through years of tests, I’ve noticed a few things I’d like to share with you.

1. The meds can suck.

I am an epilepsy survivor. For over a decade, I’ve taken different medications and different dosages, in attempts to manage my seizures. My memory has been weakened (I play memory games to improve and keep my mental abilities sharp), my joints ache (sometimes it’s not so easy to squat down or grasp things like it used to be). The memory games help to an extent but I still struggle from time-to-time with straightforward things such as occasionally walking into a room and forgetting why I entered, or not quite being able to retrieve information I have “on the tip of my tongue.” I have a smaller appetite than I used to, and occasional demeanor changes. Plus a few other minor things like sleep troubles and such. All of this has made me a survivor. I have taken all of these medications and continue to every single day. Despite the unpleasant side effects latched onto my life, I stay hopeful and optimistic that a cure will one day be found.

Other relevant stories:
• Is Epilepsy Genetic
• Can You Join the Military with Epilepsy
• What Triggers Epilepsy 

2. People might disappear.

Following my diagnosis, I was so pleased to have such camaraderie among friends that I’d grown up with…friends I’d known for years. As time went on, I made decisions for the betterment of my health, in attempts to lessen my seizures. I stopped drinking alcohol, established a sleep schedule, started to stray away from junk food, choosing to eat healthier, etc. There was no question that my friends were by my side in my transition — boy was I ever wrong. Phone calls began to lessen, I reached more voicemails than conversations and frequent excuses for not wanting hang out. So I took a step back. Most of those who I assumed to be my “friends” were walking away. Several questions swirled in my mind as to why. Was it because of my condition? Was it an inconvenience to them? Was “I” an inconvenience to them? Am I now lame because I have chosen to take care of my health? Are they scared I might have a seizure in front of them? I was left abandoned in the friend department. I realized quickly that life changes, and as much as life changes, you’ll always have family. How blessed I am for this. Yet, it left me with a question…what is a true friend anyway? I was fooled to believe I had true friends and away they went. I learned that a true friend is:

• Empathetic. Being empathetic is the ability to try and take yourself out of your own shoes and put yourself in someone else’s. Sometimes, the greatest thing friends can do is just listen to each other.

• Selfless. Friends who genuinely care and do not always think about themselves. They are able to understand their own life experiences but are not consumed with themselves. Instead, they take action to be there for others.

• Trustworthy. Being trustworthy is a trait that is essential for understanding that the deepest relationships are the ones in which we can confide in each other. Trustworthy friends remind you that you are not alone and empower you to be a better person.

In retrospect, I was thankful that some of my friends had left because they were toxic for my journey ahead and it filled me with the knowledge of genuine friendship. Little did I know, that ahead I would come upon countless people who understood my journey, and authentic friendships grew. Some people might disappear, but instead of allowing it to hurt, allow it to detox your life of those who aren’t a nourishment for your journey.

3. You can’t tell when a seizure will strike.

Seizures are sneaky, sneaky, sneaky and can strike unpredictably. I have been at the clothing store browsing shirts when a grand mal seizure dropped me to the floor. Slicing an apple, holding a knife when a seizure blinded my right eye leaving me unable to see the apple or knife, causing one of my family members to help by taking the knife out of my hand. Walking into my CrossFit class and having a grand mal seizure just before the beginning of class, my head just barely missing the weight rack. In the several years that I’ve lived with epilepsy, I have taught my family and friends what to be watchful for and if I go anywhere alone, I make certain that I am prepared should the public witness me having a seizure.

What to be watchful for:

• If I begin stuttering or slurring my words
• If I begin staring off
• If I begin to walk or move slower than usual
• If I have an appearance of panic or discomfort
• If any of my limbs begin to twitch or shake
• If asked a question and I respond unusually

How I prepare for public outings:

• I always wear my medical ID bracelet.
• I always keep my medical ID card in my wallet (created by The Epilepsy Network and available for download on the website www.theepilepsynetwork.com).
• I take along my medications and extra medication should we be traveling for an extended amount of time or in case of emergency.
• I take along water to stay hydrated.

It would make life with epilepsy so much easier if I knew when a seizure was going to waltz in but for now, what I can do is be prepared and prepare those around me.

4. You can lose parts of your independence.

We have come a long way in delivery services and transportation solutions. I am so thankful for companies such as Aldi Grocery Delivery and Lyft to bring me the things I need and get me where I need to go. Since my diagnosis, I made the decision to stop driving for the safety of myself and others. I was blessed to have survived the grand mal seizure while driving that led to my diagnosis. Regardless of the fact that I pulled the plug on driving, that doesn’t stop me from feeling frustrated sometimes when I need or want to go places on my time, or have to rely on others to drive me. Of course I appreciate the generosity of those who offer, but as an independent individual, it’s not easy to admit that you could use some help. It can be a challenge having to work around others’ schedules. I’m not wealthy and I can’t always hail a Lyft. It’s a great reminder to be grateful for what you do have, though you had to set aside some things that you once had.

5. People might question the authenticity of your epilepsy.

Some people have many concepts of what a person with a chronic illness should look like or behave like. A lot of times they’re wrong. This is why I do what I do: advocacy and blogging. Some believe I should look sickly — frail and bedridden. My smile completely gone. I’ve had people claim that my epilepsy is not as bad as I proclaim it to be because I have good days —  and on those good days, I sometimes take the opportunity to do the things that I want or love to do, such as exercising or hiking. Yes, sometimes my seizures do give me a break and when they do, I like to enjoy life a bit extra, minding my safety all the while of course. I don’t have to prove the authenticity of my epilepsy to anyone.

6. It can take work to stay optimistic.

When people see me, they see someone always wearing a smile. As if all of my troubles were nonexistent. In truth, it takes work to stay optimistic. I look out the window at the morning light thanking God for a brand new day of life — then my heart sinks a little for those who wouldn’t be waking because of a seizure having taken their lives (SUDEP). When I was first diagnosed with epilepsy, I wrestled with toxic emotions: anger, frustration, depression, even anxiety — but I overcame this with the loving guidance of God, my spouse and family. I grew to be courageous and brave, stare my condition in the eyes and grin in confidence. However, I am human and I am not invulnerable. If I reflect on my own condition, my own circumstances for too long, I begin to feel toxicity creep in. I combat it with positive self-talk and thoughts.

What other ugly sides of epilepsy have you experienced? Tell us in the comments.