Explaining My Epilepsy To Others

It has always been difficult to explain my epilepsy to my family and peers. There are a handful of reasons for this. However, the largest obstacle is that I don't have a relatable comparison. If you're also experiencing this issue, being creative is the best advice I can give if you are in a similar position.

Trying to explain how my brain works

Here's a typical situation that has happened in the past. There are times when I simply want to ask for an object such as scissors. However, I can't remember the word scissors. There are instances when I couldn't even produce a picture of scissors in my mind. This makes describing the object difficult. However, I still knew that I needed scissors.

These situations are frustrating for everyone involved. I'm frustrated that I can't communicate properly, and the other individual is frustrated that they can’t help, due to the lack of description. Beyond general frustration, it’s a strange concept for others to understand. I don't know the object, but if you said the word, I would be able to tell you that's what I needed.

Trying to explain it visually

Here is where creativity comes into play. I describe these frustrating interactions to people in the form of a cartoon comparison. Imagine I have 3 thought bubbles coming from my head. I explain that the feeling is similar to someone wiping away my middle thought bubble. I know there is something within that empty space, but it takes a little time to reach that third bubble.

This explanation seems to connect the most with others and bring about the best likelihood of a person's understanding.

Explaining that seizure-free doesn't mean symptom-free

Another aspect of my epilepsy I have trouble explaining is that I still have epilepsy. As most of you know, I am seizure-free with medication. This means that people who have met me in the last 10 years have not seen me with active seizures. To most of them, I do not appear to be struggling with anything seizure-related. (Goals!)

"Behind the scenes" is missed by most, but is seen by my husband. Although he has never seen me with active seizures, he sees my dedication to taking medication, getting bloodwork, going to doctor appointments, and keeping up with insurance requirements.

My husband also sees some days when my seizure medication's side effects hit me hard. Typically, those are the days I cancel my plans.

So much of epilepsy is invisible

The comparison commonly used about having a broken bone versus having an invisible disorder is accurate. It is significantly easier to see someone with a cast and understand their limitations. However, epilepsy does not show this outwardly.

Additionally, there are so many different types of treatment plans. For instance, I stopped drinking almost 2 years ago and I do my best not to stay up late. Cutting out alcohol and getting on a proper sleep cycle has made a huge difference in my life. Additionally, cutting out sugar is also beneficial for me. Last, I do not go to places where there will be strobing lights. Limiting my triggers has helped me remain seizure-free, but I have to be intentional about them.

There is no "standard" treatment

Also, if you have 2 friends or family members with epilepsy, their treatment plan will likely not be the same. For a broken bone, there is a standard protocol. For epilepsy, there is no one treatment plan that works for everyone. Each person with epilepsy is different.

Also, the standard expectations around care for a broken bone are much more clear, and the injury is much more visible. So canceling plans or focusing on self-care are probably easier. It is also easier for individuals to understand your leg is sore even after it's healed. However, saying your seizure-free but still needing accommodations can be very confusing for people.

Explaining epilepsy can be hard!

What I have learned over the years is rather simple. When discussing my epilepsy, I go into the situation expecting the person not to understand anything. If they can relate to my basic information, that is wonderful! However, if they can't, I’m already prepared with my creative comparison.

How do you explain your epilepsy to others? Always remember, you are not alone!