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

Reported by Bruna Nucera |  Edited and produced by Nancy Volkers

---

Cite this article: Nucera B. “Living with epilepsy should not be a secret”: Jessie Nyirenda. Epigraph 2023; 25(1): 42-45.

---

Listen below or download the episode.

Find Sharp Waves episodes on Spotify, Apple Podcasts, Google Podcasts, Amazon Music, iHeart Radio, and Stitcher.

Jessie’s seizures began in her early teens. She was initially dismissed as attention-seeking and told she might be cursed. She now works as a financial educator and is a mother of three. As part of an advisory board to the International Bureau for Epilepsy, Jessie helped develop an advocate's toolkit on addressing epilepsy stigma in Africa.  Dr. Bruna Nucera interviewed Jessie about her experience with stigma.

Sharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.

Podcast Transcript

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

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.

Nyirenda: I would zone out, someone is having a conversation with me and I go blank, then I come back and people assumed that it was an attitude problem, where I was ignoring them and so on. I noticed that it progressed into actual physical movements, where my 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, the doctor thought I was just throwing tantrums, being a difficult child. So my experience was quite bad because everybody thought I was making it up, because it wasn’t epilepsy as everybody knew it.

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

Nyirenda: The traditional doctor 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, this is maybe going a bit too far now,” and my mother agreed.

Jessie went on with her life, undiagnosed, until several years later.

Nyirenda: So I actually stumbled upon what my condition was when I traveled to the UK, to London, to see my older sister. At the time libraries were very active, so I went into a library and I started researching, and I came upon this term called Jacksonian epilepsy and it had, I could relate to what it was. So I went to see a general practitioner and explained to him and he said, “Yes indeed this is what it’s, 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 so that’s now a period of 3 to 4 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 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 and we continued with taking the medication. Of course, it was a bit of a struggle with myself, because they sort of try to convince you there is something spiritually wrong with you, I felt 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 that is where there is also a mental asylum. That’s where the treatment was being done, so even just the thought that I’m 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’s actually an 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 position really helped me with my mental state.

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

Nyirenda: I wouldn’t say so much discrimination, but the belief is that the 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 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 epilepsy and I’m on medication, there is nothing wrong with me. So even at school, at work, wherever I go and 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?” So that’s the attitude I have 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 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. Even the person who is living with epilepsy is on a different type of medication to help control their seizures.

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

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 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 to me having 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 you failed to declare. So that is one key message in my advocacy work that I’ve been encouraging people. Wherever you go, be it school or work or a new place, always declare beforehand.

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

Nyirenda: I live a very interesting life. I love to travel, and I teach people in rural areas financial education, which means that I’m away from home maybe a week or two weeks at a time. Under normal circumstances people would think that someone 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, I’m always in a safe place. I’m able to enjoy what I do and live my life to the full. 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 he has, 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 jerk a little bit and immediately I took him to the hospital. They diagnosed him with epilepsy and he’s on medication. He loves to play basketball, he also loves outdoors like me.

My son was at a school when, before he had stabilized, 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 said, “But you look so normal!” I took it lightly and said, “What is normal? 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, 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’ll 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. And life will be as blissful as it is for me.

Dr. Nucera: Thank you for these beautiful words and for this interview. Really thank you.

Nyirenda: Thank you so much Bruna.