Meet Natalie, a Curtin student living with epilepsy who seeks to use her testimony as motivation to inspire her family and those around her.
Natalie, what’s a day in your life?
"Well I think it’s just normal... I guess I get up, have breakfast and do whatever study I need to do."
So it’s not like epilepsy is a big detriment to you every single day?
"I don’t see it like that. I’ve had it all my life, and I guess from quite a young age I’ve always been told I can’t do things. So, for me, it’s given me that edge to do things - so I don’t consider myself any different from anybody else.
It’s certainly made a lot of things harder, which is why I’m doing university later in life. But I’m here and I’m enjoying it."
What type of epilepsy do you live with?
"Complex partial seizures. I have tonic-clonic seizures which are like really big seizures - where sometimes I can stop breathing. Generally, I have those at night time now. I can also have like just a few second blackout seizures. I guess I just consider myself lucky in that I have a bit of everything."
What aspects of your life has epilepsy affected?
"Learning, working, just the ability to actually have employment and be able to have paid work. My epilepsy’s just been so unstable, which means I haven’t had the ability to work - which has been really frustrating. But I guess with age it’s sort of somewhat settled down, which for me is fantastic.
There’s a lot of other conditions that are worse, even though there’s a lot of things in my daily routine that epilepsy does affect. Quite often I can be tired, with learning taking me 3 times as long to pick up things. And it can be difficult. I can’t drive.
But it makes you that more aware of things, and more determined in life to go out and achieve something. In my mid 30's now, it makes me more determined to get formally qualified so that I can be financially independent.
It makes me so proud that - without even meaning to - I’ve moved across the other side of the country to do university. All my siblings have really stepped up their game and done all these other activities because they’ve looked at me and thought, "well if she can do it, so can I."
That makes me so proud that my younger siblings are doing the best that they can in their lives."
What is the most common misconception people have of your condition?
"One of them that I’ve always found is that you're so-called ‘normal’.
A lot of people living with epilepsy don’t look like there’s anything wrong with them. For example, if somebody is deaf, you can pick it up by the way they speak. If somebody has cerebral palsy, they walk a little different. But with many people with epilepsy, we look ‘normal’. For example, people have gotten quite angry when I’ve walked into a pub to call for help. They just assumed I was drunk. It’s quite frustrating because all you’re wanting is somebody to call a family member or something.
You go to somewhere to like Centrelink and people just assume that you don’t look like you need help. It is quite frustrating a lot of the time because sometimes you do need help with forms or whatever it may be. With many neurological conditions, many incorrectly assume that just because someone looks 'normal', that they are without struggle. That does frustrate me a lot.
So doing university is something that I don’t have to do. But I don’t want to just sit on a couch, and I never have. I always wanted to do something for myself and be independent - and really raise that awareness for a lot of people and educate."
How would Purple Laces Month benefit you?
"I think it will help cultivate support and research behind it. Organisations like Epilepsy WA in every state do so much good.
From a young child, they help families and siblings go to camps and actually feel like they belong and that’s amazing. My sister and I used to do this as young children. We grew up on a farm and we'd go to camps, and she had the experience of being with other children and not looking after me. And I got the experience of actually meeting other [people living with epilepsy] and finding out I wasn’t the only one in the world.
It makes you feel so good that people raise money so that you get the ability to do this. It really is life changing and makes you feel so good that you’re not the only one in the world like this.
For any charity – kids and teenagers come from all walks of life, and this kind of support really does help them. It’s fantastic."
What does the Epilepsy WA support group mean to you?
"I haven’t been to a support group [in person] but for a few years now, I’ve been on the Facebook one.
It’s amazing. It’s just people with epilepsy talking to others, and it’s great. My younger sister lives with epilepsy as well and we’re on that. It really is a great forum where there's support from a few nurses, and where you can express yourself and be open about certain topics.
It’s just easier because when you can’t drive, getting to certain locations can be quite hard - so that’s where certain social forums are quite good."
How would you describe the work Epilepsy WA does in supporting people living with epilepsy?