Exclusive: Noor Taher on Celebrating Six Months Seizure-Free and Raising Awareness for Epilepsy

In an interview with Harper’s Bazaar Arabia, the AlRawabi School for Girls actress discusses misconceptions about the condition and her mission to inspire othersNoor Taher recently celebrated a significant milestone: six months without a seizure. Diagnosed with epilepsy in 2022, the actress’ life took an unexpected turn, marked by physical and mental challenges. Initially, the diagnosis left her feeling scared, hopeless, and isolated, severely impacting her mental health.Taking to Instagram, Noor began raising awareness about her condition, sharing her experiences with candor and resilience. Her posts resonated with many, breaking down the stigma associated with epilepsy and highlighting the importance of education and understanding. Here, she talks to Harper’s Bazaar Arabia about the condition and what she’s doing to raise awareness.

Harper’s Bazaar Arabia (HBA): Can you describe your initial reaction upon being diagnosed with epilepsy?

Noor Taher (NT): It was really bittersweet; more bitter than sweet, honestly. Growing up, I always used to pass out at the most random moments, and I always thought it was an iron deficiency or something else. When I started having tonic-clonic seizures, I still didn’t know it was epilepsy. A part of me knew, but I didn’t want to admit it to myself. When I was finally diagnosed, it was terrifying.I didn’t know what it would mean for my lifestyle, and I thought my life was over. But at the same time, knowing what was going on was a step forward. It affected me a lot mentally, because I was scared and unsure of how it would impact my career and relationships. Over time, I started to realise it’s just a part of me, like any other trait.

HBA: Have you ever experienced an episode at school?

NT: I used to pass out at school sometimes, but they were called absence seizures. You wouldn’t know it was a seizure unless you already knew about epilepsy. I would space out and suddenly collapse. The spacing out before passing out is called an aura, and I would see white instead of black. It was difficult, but I was determined not to make it a thing. However, over time, my seizures got worse, and I started experiencing more types of seizures, which was concerning for me and the people around me.

HBA: How has your perspective on life changed since your diagnosis?

NT: I wasn’t a big fan of change. The significant change in a short amount of time affected me mentally. It took a while to get used to it, but now I look at it differently. If I can adapt to having epilepsy as an actress and dancer, I can adapt to anything.

HBA: Has it ever affected you during dance? I know you do ballet and love it.

NT: Yes, I’m blessed with the ability to feel a seizure coming beforehand. I usually know a few minutes before, so I can get myself in a safe place. It has happened multiple times in my dance class, but my dance teacher is fully aware of everything and knows what to do. I feel really safe knowing that even if a seizure comes, it’s fine. I’ll just go home, but I always know it’s coming.

HBA: What are some of the most significant challenges you face both physically and mentally?

NT: Physically, it’s the lack of energy. Fatigue as a side effect of both my medications, and it really gets to me because I used to have a lot of energy. Mentally, it was coming to terms with not being indestructible. I hated being a burden on my loved ones.

It got to a point where I didn’t want to bother anyone with my epilepsy. When I felt a seizure coming on, I would go to the bathroom to have it alone. It took a while to have the confidence to tell new people about it and to stay home when I didn’t feel okay. These were the most significant challenges for me.

HBA: How did you manage to stay motivated during this time?

NT: I told myself I had no choice. It’s either you stay like this and act like your life is over, or you embrace it and continue life with a few adjustments. My epilepsy has become a motivation for me now. I see it as a challenge to do things despite having epilepsy. It’s me versus epilepsy, and I want to see how far I can go.

HBA: Can you discuss any misconceptions about epilepsy to the public?

NT: The biggest misconception is the term “sare” in Arabic, which can also mean someone being crazy. Epilepsy is a neurological condition, not a mental one. Also, misconceptions about how to help during a seizure can be dangerous.You should never put anything in a person’s mouth during a seizure. For example, one of the first really big seizures I had was in public. A friend of mine, genuinely believing that I was going to swallow my tongue, put his fingers in my mouth to prevent it. Since a seizure involves muscle contractions and intense movement, I ended up biting his fingers and breaking them. I tried to warn him, but he wouldn’t listen. The correct action is to ensure the person is safe and on their side, not to put anything in their mouth.Another misconception is thinking epilepsy is a psychological issue. While stress can trigger seizures, it is not the cause. Epilepsy is due to increased electrical activity in the brain.

HBA: How do you manage your daily life activities while also being diagnosed?

NT: It takes time. Finding the right routine is crucial. I make sure to eat well, sleep well, and avoid triggers like exhaustion and stress. Listening to your body is key. If I’m exhausted, I need to rest. Balancing everything and making some adjustments while continuing to enjoy life is important.

HBA: What message or advice would you give to someone who has recently been diagnosed?

NT: Be patient and find a strong support system. Understand that epilepsy is just a part of you, but it doesn’t define you. With the right routine, you’ll eventually find what works for you. Don’t give up, and remember that it’s not bigger than you.

HBA: Who or what has been your greatest inspiration in life?

NT: I’m inspired by everyone in my life. Every person has a purpose, and they all make me look at things differently. Everyone in my life inspires me in some way.

HBA: Can you share a memorable experience or achievement you particularly love?

NT: Raising awareness about epilepsy and connecting with others who have it has been incredibly meaningful. Hearing their stories and sharing advice has been very fulfilling. It felt like I was doing the right thing, and I hope to reach more people in the epilepsy community.

HBA: Can you tell us about any current projects or what you see in the future for yourself?

NT: I can tell you one thing—it’s going to be something very different, something I’ve never done before, but I’m really excited to do it. Source: harpersbazaararabia.com, Jida Elfghi