Advocacy: how to know yourself and your context

“Advocacy creates a safe space for us to try. To learn what our bodies and minds need while also letting our people know the same. When we advocate for ourselves, we are reminding ourselves that we are worth it.”

What is advocacy?

I brought this word up to a friend the other day and I was met with a fairly blank stare and a slight furrowed brow. 

“Have you heard that word before? Advocacy?”

“Can’t say I have.” 

Ironically enough, this encounter happened as I was drafting this exact blog. What are the chances?!

According to the Oxford Dictionary, an advocate is: “a person who pleads on someone else's behalf”.

To be our own advocate, we would simply be pleading on our own behalf.

So… why plead for ourselves? What’s the point?

As I often say, epilepsy is not a one-size-fits-all. And it’s certainly not a straightforward disease. I learned the importance of advocating for myself when I noticed my needs weren’t necessarily being met when I left the neurologist. 

“Why are they not doing more testing?”
“What does this result even mean?”

“I’ve heard this could work for treatment, but the doctor didn’t even mention it.”

Advocacy creates a safe space for us to try. To learn what our bodies and minds need while also letting our people know the same. When we advocate for ourselves, we are reminding ourselves that we are worth it.

As sad as it may be, no one is going to care as much about your health as you will. This is your one body, your one brain, your one mind. Our job is to learn as much as we can about ourselves, and advocate for those needs.

How beautiful is it that absolutely none of us are the same? We are all unique, just like a snowflake. And our epilepsy is just the same. 

Your friend might respond great to medication, but you haven’t been able to be stable on the same medication. Maybe you have absence seizures, but the only other person you know with epilepsy has tonic-clonic. 

We are not all meant to be treated the same, and I believe there to be some beauty behind that.
That being said, let’s learn about ourselves! The internet is a tool. I say this intentionally. Just because you read one specific treatment works for one specific individual or group of individuals, does not mean it will necessarily work for you. But you are learning about it! And it is something to certainly bring up to your neurologist and team. 
Advocate for yourself in your workplace.
Advocate for yourself at home.
Advocate for yourself with your friends.

In a 2005 study focusing on self-advocacy in students with learning disabilities, Test, et. al (2005) put it in the simplest form: 

Knowing yourself and your context. 

Simple, yet effective.

Who are you in what context?

We all have different contexts. I advocate for myself mostly in the medical realm. 
I am a 27 year old with idiopathic generalized epilepsy. I want the best treatment for myself and in order to do so, I must learn to advocate for my health. I subscribe to medical journals, read about different treatments from all around the world, and study our anatomy and physiology to understand how what we do affects our bodies. I bring my ideas up to my neurologist, therapist, and other specialists I choose to see. 

I am also a sister, friend, and daughter. If I do not feel heard in conversations or supported throughout my endeavors, it is my duty–as a friend, daughter, and sister– to let my community know. It is also my duty to let me people know the ways I best feel supported, loved, and encouraged.  It can be tricky to speak up for ourselves, and the safest place to start is with our people.

I am curious what you’ll find throughout speaking up for yourself in your different contexts. Do you feel a bit more understood? Do you feel seen for the first time? Let me know! I am looking forward to hearing from you!
Knowing ourselves is knowing our boundaries–physically, emotionally, spiritually…holistically! It is knowing what our bodies can and cannot take through trial and error. 

Though advocacy might have a simple definition, it can certainly be difficult to put to practice. Day by day, minute by minute, we can choose to learn more about what our bodies need and in turn, speak up for how to best take care of them.
Have a safe and seizure free day! :)