Struggle is not always visible

 

This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30.  Follow along and add comments to posts that inspire you! 

 

 

Stigma. What is that, really? According to an article, stigma “represents the underlying disgrace, negative stereotypes, harsh judgments, social disapproval, isolation, ostracism and abjection that are linked to the possession of any “mark” of difference and devaluation.”

 

I was diagnosed with epilepsy when I was 11 (You can read my story here.) and I never felt like I was different. Stigma was nonexistent to me. Because of the way I was treated by family and friends – I wasn’t treated any differently after I got diagnosed – I never felt any different than other people. So I can’t stress enough how important it is the way you treat people, but also the way you treat yourself. Do not let yourself be defined by anything. Epilepsy is not you. It’s part of you, sure, but that’s where it ends. It’s part of you just like gender is part of who you are, race, religion, your profession. You are not one thing, you are many things. Make sure you and people around you know that.

 

That said, I do have moments of insecurity. I’ve never been truly aware of them as I cover my insecurities with sarcasm and denial of their existence. However, I too have experienced stigma. My experience is mainly in the form of isolation. For instance, if I’m having a bad day and I had 2 seizures before even having breakfast, there’s a big chance that I'll cancel all my plans for the weekend and stay at home. If I have to work, I would never call in sick. This is mainly because of my upbringing that was focused on discipline. However, if I have a day off, there’s a 99% chance that I’ll spend it at home after knowing that there might be more seizures to come. Of course I spend it at home so others won’t see me, so I’d avoid embarrassment in public, so I wouldn’t have to explain once again that I’m fine after the seizure has ended. This brings me to the next point: meeting people for the first time.

 

Whenever I meet someone new and I know they’re going to be part of my life, I have to tell them that I have epilepsy and that I might have a seizure in front of them. I have to explain them exactly how my seizure looks like in order to prevent a (big) shock, and to make sure they know what to do. In my case, they don’t have to do anything. They just have to let me be for approximately 30-45 seconds and then my seizure ends. However, being conscious of my surroundings during a seizure makes me extremely insecure and embarrassed. I just want it to end as soon as possible so I can ignore that it even happened and we can all move on with our lives.

 

Once I realized that I was living in denial and that I am actually struggling with shame during a seizure, I decided I needed to do something about it. Since I am awake and fully conscious during my seizure, I decided to look in the mirror and see what other people are seeing. This might sound strange, but this was the only way I could understand (reactions of) others better. Furthermore, I could explain it to them better. However, more importantly, this was also supposed to help me accept what is happening to me during a seizure. Accept its physical appearance in order to heal this mental struggle I was experiencing.

 

So I started looking in the mirror every time I had a seizure, I analyzed every movement that was happening and slowly accepting the way I look and sound during a seizure. Again, this might sound like a weird thing to do, but it actually helped.

 

There’s this thing I often hear people say: “You have to love and accept yourself first in order to allow others to love you completely as you are.” I still have insecurities and I still have those moments of shame, but I’m trying to understand the true definition of “acceptance” more and more as I allow myself to look at my body – what it goes through during a seizure – and accept it the way it is.

 

Compared to a few years ago, I can confidently say that I have almost no trouble telling people that I have epilepsy. I usually do it during the first meeting – people deserve honesty and the truth. If some choose not to be part of your life, that’s not your fault. Maybe they need some time to process everything. Maybe they’re just not meant to be part of your future experiences in this beautiful world.

 

Accept yourself like you accept others. We are our worst judges. Once we realize that, life is so much easier and beautiful to experience.

 

- June 28th, 2015

 

Contact info:

Email: lets.talk.now.community@gmail.com

 

 

 

Be sure to check out the full schedule of bloggers at http://www.livingwellwithepilepsy.com for more on Epilepsy Stigma.