“Living with epilepsy should not be a secret” – Jessie Nyirenda

Reported, edited and produced by Nancy Volkers

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Nucera B. “Living with epilepsy should not be a secret” – Jessie Nyirenda. Epigraph 2026; 28(1): 24-27.

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Podcast Transcript

Jessie Nyirenda: My name is Jessie Nyirenda. I'm a mother of three based in Lusaka, Zambia.

Nancy Volkers: Jessie was part of an advisory group that developed a toolkit to help address epilepsy stigma in Africa. The International Bureau for Epilepsy, or IBE, published the toolkit, which is the first in a series to address stigma in regions around the world.

Dr. Bruna Nucera interviewed Jessie about her experience with epilepsy and her advice for people with epilepsy on how to handle stigma. Jessie began having seizures in her early teens, though they weren't recognized as seizures at first.

Jessie Nyirenda: I would zone out. Someone is having a conversation with me and I go blank. Then I come back. People assumed that it was an attitude problem where I was ignoring them, and so on. We noticed that it progressed into actual physical movements where my [00:01:00] upper body, like the hands would be jerking, but I would remain conscious. When I was 14 years old, that's when I could hear people talking and panicking and asking me why I was banging my head against the wall, but I couldn't say what was happening. So my parents rushed me to the hospital. Unfortunately, even the doctor didn't do much research because I'm the youngest in the family, and the doctor thought I was just throwing tantrums, being a difficult child. So my experience was quite bad, because everybody thought that I was making it up because it wasn't epilepsy as everybody knew it.

Nancy Volkers: The belief that people with epilepsy are possessed by demons is common in many parts of the world. Jessie and her mother went to several churches in an attempt to get the demons out of her. [00:02:00] When that did not work, they visited a traditional healer. The traditional healer suggested that Jessie had been bewitched.

Jessie Nyirenda: The traditional doctors started insinuating that it could be somebody, some relative on my father's side of the family who had bewitched me. I think at the time I was maybe 15 or 16 and I said, “Okay, I think this is going a bit too far now.” And my mother agreed.

Nancy Volkers: Jessie went on with her life undiagnosed until several years later.

Jessie Nyirenda: So I actually stumbled upon what my condition was when I traveled to the UK, to London to see my older sister. And at the time, libraries were very active. So I went, went into a library and I started researching and I came upon this term called Jacksonian epilepsy, and it had, I could [00:03:00] relate to what it was.

So I went to see a general practitioner and explained it to him, and he said, “Yes, indeed, this is what it could be,” but they couldn't run tests. So I had to come back to Zambia where the tests were run. So that was me being actively involved in research to find out what exactly I was going through.

That’s now a period of three to four years of not knowing what was happening to me until I finally discovered what the problem was. I had instances where people would say that traditionally it meant that I had been bewitched and others who have of Christian faith believed that it was demon possession.

The support that I had from my immediate family where we stood strong and realized that it's a medical condition [00:04:00] and we continued with taking the medication. Of course it was a bit of a struggle with myself, because they sort of like, try to convince you that there is something spiritually wrong with you.

I felt that I had, I was less of a person and I had to do so much more to convince everyone else that I too was human. So I had a lot of struggles. And the other thing is that at the time, the doctors that I could see were at a hospital where there is also a mental asylum. That's where the treatment was being done. So even just the thought that I am going to get my medication from a mental hospital was like a reaffirmation that I am mad.

Growing up I had all those struggles and, fortunately, I started doing research until I found that there is actually an [00:05:00] association for people living with epilepsy. And I started getting support in my early 20s from there. So there was counseling there and then I would also go for therapy as well. So for me, I think that that position really helped me with my mental state.

Dr. Bruna Nucera: Thank you again. Has your family suffered discrimination from your community?

Jessie Nyirenda: I wouldn't say so much discrimination, but the belief is that a person who is living with epilepsy in the community in general is seen as not a suitable wife.

I think because of the support that I have had from my immediate family, it's one of those things where from early stages, I would declare to everybody that, “Yes, my name is Jessie and I'm living with [00:06:00] epilepsy and I'm on medication. There's nothing wrong with me.” So even at school, at work, wherever I go and I meet new people, it's something that I say outright because I felt that if I've got nothing to hide, then nobody can have a weapon against me that can break me. I think that position that I took in accepting it made people realize “She's accepted it and she's living with it. What negative thing can we say?” I mean, so that's the attitude that I've taken.

I did have friends and some family members who didn't want to be with me or were mocking me and using derogatory terms. In order to protect my emotions, I didn't hang out with them as often as possible. So that was a way of protecting myself. But now, growing older, it's just sticks and stones. People say a lot of things out of [00:07:00] ignorance. So I don't let it hurt me.

Living with epilepsy should not be a secret. So when I speak about it openly, it's a way of communicating to people to say, “I am just a person who is living with epilepsy, but I'm a human being just like anybody else.” Yes. So we take it the way somebody who has diabetes, they need to be on insulin. The person who is living with epilepsy is on a different type of medication to help control the seizures.

Dr. Bruna Nucera: Did your epilepsy make it difficult to get a job?

Jessie Nyirenda: Not necessarily difficulty in finding work, but maybe difficulty in keeping the jobs? So the times that I started working, because I have photosensitive epilepsy, so the computers that were there would be [00:08:00] affecting me because of the flickering lights.

In my first job in the bank, I had declared that I had epilepsy, and I also informed them that I needed a screen filter to prevent me from having seizures. So because I was proactive, I didn't hide it from them. The company was compelled to buy the necessary equipment that would minimize the flickering lights on the computers.

Declaring at every opportunity beforehand and not hiding epilepsy has paved the way for me to have an easier relationship with all my employers. And this is what I encourage people to do, to say the law is there to protect us, and the employers are also compelled to adhere by the law. However, if we keep it away from them, then they would then use that as a means to terminate a contract because [00:09:00] you failed to declare.

So I think that is one key message that I've been in my advocacy work that I've been encouraging people wherever you go, be it at school, at work, or a new place, always declare beforehand.

Dr. Bruna Nucera: Thank you. And would you like to tell us about your life today?

Jessie Nyirenda: I live a very interesting life. I love to travel and I teach people in rural areas financial education, so, which means that I'm away from home maybe a week or two weeks at a time. Under normal circumstances, people would think that somebody living with epilepsy should always be enclosed, shouldn't travel, but I don't let that control my life. I know what my triggers are. I know my auras and because I inform people who I work with, so I'm always [00:10:00] in a safe place.

I'm able to enjoy what I do and live my life to the fullest. I love hiking as well. And I'm a mother of three children. Three beautiful children. Yes. One girl and two boys. My second born, a boy, also has epilepsy, so I'm a mother of a child with epilepsy.

I can say that his experience has been easier than mine, relatively, in that I saw what I used to go through. His teachers were complaining that he's ignoring them in class. That he's being rude. When they ask a question, he doesn't respond. And then I noticed how he would sort of like jerk a little bit and immediately I took him to the hospital. They diagnosed him with epilepsy and he's on medication. He's living a life positively. He loves to [00:11:00] play basketball. He also loves outdoors like me.

My son was at a school when before he had stabilized he was, whenever he would get nervous, he would have seizures, and the school told me that I have to withdraw him from that school because they don't know how to deal with it. I would like to see a situation where teachers are more informed. Treating epilepsy should be part of the core first aid treatment where teachers shouldn't fear to teach children who are living with epilepsy, because imagine if all the schools turned him away. That's what I would like to urge.

And then other than that, I remember I went for a radio interview and I was talking about my experience living with epilepsy, how I found it. And the presenter just looked at me gobsmacked. And he says, "But you look so normal." And then I took it lightly and [00:12:00] said, "What is normal? You know, every human being is a human being, so how do you measure normal?"

Living with epilepsy is just like any other ailment. And once we recognize that, then everybody will be accepted. People will be treated the same. You know, equal access to medication. So don't hide your children. Let them live their life. And the people living with epilepsy, know your auras, what triggers your seizures and just start seeing how you'd be able to control your seizures. Don't hide it and let people around you know how to treat you when you're having a seizure.

Dr. Bruna Nucera: Thank you for these beautiful words, for this interview. Really. Thank you.

Jessie Nyirenda: Thank you so much.