For generations, epilepsy has been shrouded in myths and spiritual misconceptions, leaving those who live with it misunderstood and isolated. But behind every diagnosis lies a human story —one of resilience, adaptation, and defiance against stigma. In this interview, Osarumwense Miracle shares her journey with epilepsy, a condition triggered by malaria but compounded by societal ignorance. From her first seizure — met with fear rooted in superstition — to navigating entrepreneurship, faith, and daily life, Miracle opens up about breaking stereotypes, advocating for awareness, and reclaiming power in a world that often reduces epilepsy to whispers and shame.
TheCable Lifestyle: Beyond your roles as an entrepreneur and music lover, how do you define yourself, especially in the context of your epilepsy advocacy?
Miracle: I’m a music lover and also an epilepsy advocate. Epilepsy is something I had to deal with myself, without having any platform I could relate to when it started. So, my platform is a pet project of mine, a huge part of me, and I hope I’m inspiring people. Recently, I created a seizure diary where people can document their seizures. That felt really good because it is something I have wanted to do for the longest time.
TheCable Lifestyle: Take us back to the beginning: How did epilepsy first enter your life, and what was your diagnosis process like?
Miracle: It started in December 2017. At the time, I had just graduated from my first degree as a medical laboratory technician. I was already working, and one day I felt sick. That was how it started. I was being treated, so I didn’t go to work. I was at home with my younger sister when it happened. As young as she was, she had been influenced by the notion that seizures and epilepsy are disgraceful. So, the moment I started shaking, she locked the windows. If it were something else, I think she would have come out to ask for help, but instead, she locked the doors and windows and called my mum to tell her I was shaking.
Those are the types of stigma and stereotypes I do not want around epilepsy. It is not a shameful act, possession, madness, or mental illness. You should ask for help when you have seizures. You shouldn’t hide. A lot of people are not getting the proper treatment they need because they are hiding.
TheCable Lifestyle: Were there any warning signs before the seizure started?
Miracle: There were no specific symptoms. I was being treated for malaria and was getting better, but I was very weak. That morning, I had the intention to go to work, and I was already halfway to the place where I would get a bus to work. But I felt dizzy and went back home. When I got home, I lay down, and after a while, I started shaking. After that, I became half unconscious.
According to my elder sister, I was rejected at my family clinic and referred to a federal hospital. But because of some personal reasons, I was not taken to the federal hospital until one of my mum’s church members recommended a clinic. According to my sister, at this point, I was already stretching like someone who was about to give up the ghost. When we got there, they called their consultant, and the consultant instructed the doctors on what to do. However, due to the amount of the drug that was administered to help the seizure subside, I was unconscious for about two days.
That was just how the seizure started for me. I don’t think I ever had convulsions, even when I was younger, because my mum would have mentioned it.
TheCable Lifestyle: So, how were you certain it was epilepsy?
Miracle: I tell people that the fact that a person has a seizure doesn’t mean the person has epilepsy. Before being diagnosed with epilepsy, you have to have some tests done and must have had seizures consecutively, three to four times, before the test can even be carried out.
At the clinic, I was not told I had epilepsy. I was just told it was due to the malaria I had. After that time, I had seizures whenever I was stressed, felt slightly sick, weak, too cold, too hot, or for any reason. So, we went back to my family clinic, and I was prescribed drugs for the seizure, but they weren’t effective. The seizure continued, and my mum started looking for natural remedies to cure the seizure. This was because everybody was already saying it must be spiritual, especially since I had just graduated, started working, and was supposed to go for my scientific programme.
My mum was so shocked, and she knew she couldn’t send me to school with that because my seizure could come anywhere, anytime. My mum looked for several alternatives while I was taking the drugs. But after a while, an extended family member talked about someone he knew who experienced the same thing and referred us to a federal hospital.
So, I went to the hospital. I did several tests, including checking my calcium, blood count, sodium level, and EEG. Meanwhile, EEG is the indicator. It’s the test that would actually show if I had epilepsy or if it was just random seizures. All the other tests came back good, but the EEG indicated that I had epilepsy.
At the laboratory where I had the EEG, the technician was arguing that I might be pretending, that I was too fine for seizures. That’s something I always say: that people should not be judged based on their physical appearance. You cannot tell epilepsy by how people look.
The test did not go on for up to 60 minutes before he started seeing indications of epilepsy. But he said to be sure, I should come back for the result the next day. When I went, it was confirmed that I had epilepsy and the exact type of it. So, that’s how I was diagnosed.
However, having two seizures doesn’t mean you have epilepsy. You have to get the test done because there is a type of seizure called functional epilepsy that is caused by psychological trauma. Meanwhile, epilepsy is caused by abnormal electrical activity in the brain.
TheCable Lifestyle: How did your family and friends process your epilepsy diagnosis? Were there relationships you felt you had to step away from?
Miracle: There was no specific way my family reacted. I guess they didn’t know how to express their feelings to me. As for friends, I withdrew from everyone, including my partner at the time. I stopped talking to people because I didn’t want anyone to find out, and that’s how I lost a lot of friends I made in a tertiary institution. So, I can’t say how they reacted, because they weren’t there. I left.
TheCable Lifestyle: What challenges do you face, or have you faced, in managing epilepsy daily?
Miracle: Epilepsy is not a one-size-fits-all condition or a walk in the park. You can’t have epilepsy and think you are just going to get over it. There are a lot of things I can’t do now because of epilepsy, like swimming, driving, or going back to school. My mum is not comfortable with me being alone in a different city where no one understands my seizures.
For daily challenges, the side effects of the drugs are major. I often feel so tired and drowsy most of the day, or I have auras, and still need to go out and get things done. I wasn’t able to work for a year because I hadn’t figured out how to manage my seizures. At the time, I was having them consistently, sometimes twenty times, other times fifteen. It wasn’t until last year that my seizures reduced a bit, and I started doing something.
All of that affected me mentally. Imagine not doing anything, needing money, and watching your friends achieve everything you also want to achieve. A few years ago, I saw taking the drugs as a chore, but not anymore. Now, the cost of medication is the real challenge. You struggle and scrape together everything you have just to afford your medication, so you don’t lose brain function. It’s not only about having seizures; it’s about how much your brain deteriorates with every seizure. Seizures that are not managed can lead to premature death.
Finance is one of the biggest challenges of living with epilepsy. You need a well-balanced diet because lacking or being low in certain nutrients can affect the brain and trigger seizures. If you are low in calcium, potassium, vitamin B, or vitamin C, it could come out as a seizure. And expensive medications also come with their own side effects.
TheCable Lifestyle: Are there specific triggers for your seizures, and how do you avoid them?
Miracle: I have many triggers. Being exposed to screens really affects me. To avoid that, I had to withdraw from the graphic design training I was taking in church, and I stopped using screens for a while. Then there is light. Any kind of light can trigger me, sunlight, camera light, or flashlight, so I wear photochromic glasses.
Cold, noise, loud music, and heat are also triggers. I get triggered by loud music, and for someone who loves music, that was a big challenge. So, when I’m in public or in church, I wear earbuds to filter the noise. I also make sure to pay attention to symptoms of illness so I can treat myself early.
Stress is my greatest trigger. That’s one reason I couldn’t work. If I stress myself throughout a month, I will have seizures consistently the next month. Now that I run a small business, I take a day off regularly so my brain can relax.
TheCable Lifestyle: What are some misconceptions people have about epilepsy, and what do you wish they understood better about the condition?
Miracle: There are a lot of misconceptions about epilepsy, and I wish people, especially friends and loved ones, would cut us some slack. Some people still believe epilepsy is contagious or that people with epilepsy are possessed or mentally unstable. These beliefs are still around, although people are doing better, but I hope they can be completely eradicated.
Epilepsy can come with some mental health issues, but it is not a mental health condition. It can trigger anxiety, for example, but it is not madness. Touching, kissing, or having intercourse with someone who has epilepsy will not give you epilepsy. I once heard of someone who kicked a girl out because she had a seizure while they were having sex. I am emphasising these examples because they are very common.
Epilepsy is a chronic illness. It’s not something you can beat out of people. Sticking a spoon into the mouth of someone having a seizure is not helpful; you can damage their teeth or choke them to death.
Even though epilepsy may not be a physical disability, it is a huge one that people should be given grace for. For example, as a partner, you should understand that your partner needs breathing space. If a woman with epilepsy says she cannot give birth naturally, accept it, because there is a chance she might have a seizure during labour.
Another misconception is that restraining a person having a seizure helps. The truth is, restraining them can cause injury. There is proper seizure first aid, which includes staying by them, turning them to their side, and making sure they are safe. That’s all you need to do. You don’t need to hold them down; just remove sharp objects around them and stay close.
Also, not everyone with epilepsy loses consciousness during a seizure. So, don’t say they are pretending. They might see you or hear you, but be unable to respond, and that does not mean they are faking it.
TheCable Lifestyle: Have you faced any discrimination due to your condition, and what was it like?
Miracle: The thing with humans is, they might not openly discriminate, especially when you’re good-looking. I’ve heard people say someone didn’t want them because they have epilepsy, but I tell them that may not always be the reason. Sometimes people just feel like you’re beneath their standard. But society tends to accept a lot when you’re physically attractive.
Even doctors sometimes judge based on appearance. Personally, I haven’t faced outright discrimination.
And whenever someone tries it, I speak up for myself, which I think more people should do. The few friends I have have never treated me differently because of my condition, so no, I haven’t experienced serious discrimination.
TheCable Lifestyle: Have you ever had a public seizure, and how did those around you react?
Miracle: My auras are usually very accurate, so whenever I feel one coming on, I quickly look for a place to sit, no matter where I am. Since I’ve been on medication, my seizures aren’t as severe or convulsive as they used to be.
I’ve had several seizures in the hospital, especially in the common waiting areas. By the time I get there, I’ve usually already been seizing at home, but I still have to go through the process of registering before seeing a doctor. I’ve also had seizures in public places like markets. Thankfully, my auras give me enough warning, so I always try to sit somewhere, sometimes in a stranger’s shop.
I can’t remember every single seizure, but I’ve had them in markets, hospitals, and even outside my workplace. It doesn’t always feel “public” because sometimes there aren’t many people around. I also try to manage my triggers when I feel an aura; it doesn’t always lead to a seizure, but I withdraw and avoid doing anything that might make it worse. And if it does happen, at least I’m already sitting, so there’s no big fall to draw attention.
As for people’s reactions, I’m usually not aware enough in the moment to notice. And honestly, I don’t care what anyone thinks when I’m having a seizure. What do you expect me to do? I can’t control it. If you have a problem with how it looks, that’s your business. You can talk to me when I’m better.
TheCable Lifestyle: What do you want people to know about helping someone who is having a seizure?
Miracle: I use a simple acronym called SSAD. It stands for Stay, Safe, and Side.
Stay means you should stay with the person. Do not leave them alone. Make sure they are not close to anything harmful, and if they are about to fall, try to guide them gently to the ground. Also, move any object around that could cause injury.
Side means turn them to their side if they fall. Do not let them lie on their back. Turning them to their side helps prevent choking and keeps their airway clear.
Safe means ensuring they are breathing well and not choking or in further danger.
This is the basic first aid for a seizure. If the seizure lasts longer than five minutes, get medical help immediately. Do not put a spoon or anything else in their mouth. That is a myth. Also, do not try to restrain them. That does not help.
TheCable Lifestyle: How have you been able to balance work, relationships, and other aspects of life while managing epilepsy?
Miracle: I try to take as many breaks as I can so my seizures do not get as bad as they used to be. That has really helped with managing my health overall.
As for relationships, I am currently not in one, and that is by choice. I feel like some people think they are doing you a favour by dating you because you live with epilepsy. They act like you should be grateful they are choosing to be with you, and I know myself well enough to know that no one is doing me a favour. So yes, I am not in a relationship right now, but when I find the right person, we will figure out how to balance it. I believe it will require a partner who understands that epilepsy is not a simple condition. It is not just about someone falling and shaking. It is deeper than that, and it takes learning and patience.
Thankfully, my seizures have improved a lot, and I am really grateful for that. I have started going to church again. I took a long break last year because the noise, lights, and camera flashes were triggering my seizures. If I had the chance, I would ask that people stop taking photos with flash in church, but I do not think we are ready for that conversation yet.
With my business, I have had to take breaks, and while that is not great for business, I do not really have a choice. That is the only way I have been able to manage everything so far.
TheCable Lifestyle: How do you respond to people who believe epilepsy is caused by spiritual or supernatural forces?
Miracle: I usually just ignore them. When you try to educate people, many aren’t interested in understanding; they just want to win the argument. Some even send me messages, and I don’t respond. Others say they admire how I handle my diagnosis and want me to speak to a family member who thinks epilepsy is spiritual. But even when their family can afford medical care, they still refuse checkups, insisting on divine healing alone. I try to convince them, but when it gets exhausting, I let them be.
TheCable Lifestyle: What support systems, family, friends, and medical professionals have been most helpful in managing epilepsy?
Miracle: Honestly, I would say I have been the most helpful to myself. It’s not out of pride, but I believe the biggest mistake anyone with a chronic illness can make is relying on others to manage the condition for them or to make them feel better. I’ve had to take full responsibility for myself, and that has taken a lot.
My family’s main concern is usually whether I’m physically injured during a seizure, and that I get to the hospital. But they don’t quite understand the mental and emotional struggle. Nigerian doctors also fall short in this area. They don’t fully grasp what it means to live with epilepsy mentally. If I could, I would recommend that people with epilepsy be treated by doctors who also live with the condition. They would understand on a much deeper level.
I do have a friend who helps boost my confidence, and that support matters. But if I’m to be sincere, the person who has done the most for me is me. I’ve gotten myself through many hurdles. Of course, God may be a part of it, but being realistic, I’d say it’s me. My family does support me in the best way they can, especially financially. My friends make me laugh and help me forget what I’m dealing with for a moment. But when it comes to facing the real struggles, it’s mostly me and the support group I created. They get it. When I rant, they truly understand, and that helps a lot.
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