One day you will tell your story, and it will be someone else’s survival guide.

Storytelling has always been a huge part of society. Every story shared is a chance to make someone feel less alone and more connected to the world around them. Stories from our Australian Women with Epilepsy community members give us all deeper insight into a life with epilepsy.

Monazah and her children.

It’s important to remember we are not alone.. That we are all here to help and support each other” – Monazah

Monazah's Story.

My name is Monazah, I am 27 years old and I live in Sydney. I have been married for 6 years and have 2 beautiful children, a boy and a girl. I was diagnosed with epilepsy in 2017 and it has affected many things in my life, and also me as a person.

There are days when I am fine and then there are days where I have my seizures and I blackout, not knowing where I am, who is with me, feeling confused, lost, but mostly scared. People who are not aware of epilepsy and what it does to a person can only judge from the outside, not many understand the seriousness of the illness.

Sometimes medication does not help. We will never know why every body is made different and every body is diagnosed with a different form of epilepsy. My illness has made me have really bad memory loss. I’m so afraid that when I am with my 2 children, I will start forgetting the magical moments I cherish so much with them.

I appreciate every day without a seizure, and I value life more now than ever. I cherish every moment I spend with my children and family. It’s important to remember we are not alone, and we are all here to help and support each other. I am telling my story so I bring can awareness, not only within the Muslim community -where an illness defines who you are – but also around the world so people can see and acknowledge that epilepsy is not just ‘shaking and falling down.’

As told to Australian Women with Epilepsy by Monazah.

I’ve been pretty healthy my entire life, no real serious health issues. I took a pregnancy test at 5 weeks & the next day I suffered my first seizure.” – Gabi

Gabi's Story.

I’ve been pretty healthy my entire life, no real serious health issues. I took a pregnancy test at 5 weeks & the next day I suffered my first seizure. It was a tonic-clonic seizure & thankfully I was at home with my partner. I was waiting to go to an appointment so cant imagine what would’ve happened if it occurred 10 minutes later while I was driving. I don’t remember much, but I came to on the floor with the ambo officers standing over me asking ‘what just happened’. It took me roughly 10-15 mins to regain full awareness, by that time I was in the emergency room. They ran their tests & came to the conclusion it was a one off thing… they sent me home, to rest & so forth.

3 weeks later I was in bed with my partner, I got up to go to the toilet, as I laid back down I remember a wave of de ja vu coming over me, I looked over to my partner & felt myself ‘drift off’ – he looked at me & said “are you okay?” & I remember not being able to respond. I had a pretty severe seizure this time & again, came-to with the ambos in my bedroom, I just looked at my partner and said ‘it’s happened again hasn’t it?’ They took me to the hospital, then back to my doctor to get referrals to work out what was going on. I went for ECG’s, MRI’s and spoke to a neurologist who told me I was now epileptic. It was explained to me that being pregnant and the stress on the body may have just been enough to push me over my seizure threshold.

Thankfully I found medication that has kept me seizure free & was safe for pregnancy. This all happened in March/April 2020. I went through my pregnancy without having another seizure and thankfully was able to give birth without having one as well. It’s something I’m still learning to live with. It was a massive blow to my confidence levels. I wasn’t allowed to drive until I reached 6 months seizure free, & now being a new mum its something I worry about almost every day but I don’t want to be living in fear because of it either, so it’s just learning to adjust to my ‘new normal’. It still feels strange to say ‘I have epilepsy’.’

As told to Australian Women with Epilepsy by Gabi.

Gabi’s epilepsy surfaced during her pregnancy.

Justine was diagnosed at the age of 41.

Many people with epilepsy experience a long delay between onset of symptoms & diagnosis. Tests often come back negative if there has not been recent seizure activity. This is frustrating & confusing for people & delays treatment.” – Justine

Justine's Story.

'I was diagnosed with epilepsy at age 41, 8 years ago. It’s been quite a journey & many days are a struggle. I think it’s important to share stories as statistics don’t seem to reach people. & People tend not to share personally due to shame and stigma.

I believe I experienced seizures for many years before I was diagnosed. Many people with epilepsy experience a long delay between onset of symptoms & diagnosis. Tests often come back negative if there has not been recent seizure activity. This is frustrating & confusing for people & delays treatment.

Eight years before my diagnosis I had a car accident. I had no idea why, & couldn’t remember before or during the accident. Thankfully I wasn’t badly injured but my tongue was bitten through. I booked myself in for tests because I knew I had blacked out in some way. By the time tests were arranged 3 months later there was nothing identified, but I believe this was a seizure.

In the year leading up to my diagnosis I suffered severe dizziness, deja-vu,headaches & visual hallucinations. I booked myself into a neurologist who almost immediately identified it was likely to be seizures. I was fortunate at the time of my EEG that brainwaves were identified.

I want people to realise there are many types of epilepsy. I have partial seizures which involve sensory symptoms, sometimes confusion & difficulty understanding or speaking. My main seizures occur in my sleep; I wake confused, with a severe headache & often need to sleep during the day.

The effects of epilepsy go beyond the seizure. The fatigue, the social impact & the impact of seizures and medications on memory, mental health & functioning are profound. Like many chronic illnesses it is hidden. Our functioning fluctuates & we don’t feel well understood by the community.

I am a psychologist & having developed anxiety & depression through epilepsy I feel I can relate better to the people I work with. I’m thankful that I can help others & have empathy for people with a chronic illness.’

As told to Australian Women with Epilepsy by Justine.

If you would like to submit your epilepsy story, you can send us a message here.