Shining a light on stigma and discrimination in epilepsy

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Stigma leads to discrimination and can affect all aspects of a person’s life. Dr. Bruna Nucera talked with Mary Secco about various aspects of stigma, as well as the International Bureau for Epilepsy’s resources for addressing epilepsy stigma in Africa. IBE plans to produce similar resources customized to other regions.

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

Podcast Transcript

Mary Secco: My name is Mary Secco. I am the chair of global outreach for an international organization called the IBE, or the International Bureau for Epilepsy.

The IBE developed an advocate’s toolkit for reducing epilepsy stigma in Africa. The resources, ideas, and guidance came from people with epilepsy and their families.

Secco: We used this participatory approach because I really believe that if you want to know about stigma, you ask people who are stigmatized. “Why are you stigmatized? If you had, you know, if you could change anything, how would you change it?” And the ideas are out there – we need to give people with epilepsy the courage and the tools so that they can now try to challenge stigma.

Dr. Bruna Nucera spoke with Mary about what stigma is, how it affects the lives of people with epilepsy, and what can be done to eliminate it.

Dr. Nucera: What do we mean by health-related stigma and what are the three broad classifications?

Secco: That’s a good question. Well, health-related stigma happens when someone with a health condition, whether it’s epilepsy or HIV/AIDS or depression, is judged unfairly simply because of their medical condition. So in epilepsy, it can cause the person with epilepsy to feel rejected or excluded, or devalued, or treated unfairly because they are perceived by the community and other people as being different or unworthy. And stigma, itself, causes discrimination, and that’s the real problem here.

Dr. Nucera: And how can we define stigma in epilepsy?

Secco: So, defining stigma in epilepsy we look at the root cause. So there are three classifications. As an example, there’s internalized stigma, which is also known as felt stigma. This type of stigma is when the person with epilepsy themselves stigma--self stigmatizes. So as an example, if a person with epilepsy says, “I would never be able to go on a date because I have epilepsy” – that would be self-stigma or internalized stigma.

Another classification is interpersonal stigma. That often happens with family members. They either stigmatize or are stigmatized and an example of that would be if a mother said, “My child can’t go to school because they have epilepsy” or “I’m keeping them home from school because I don’t want them to go on the field trip because they have epilepsy.”

And then the third type of stigma that affects people with epilepsy is institutional. It can either be enacted through laws, or punitive because laws don’t exist. For example, if there are punitive laws that don’t protect people – for example in Africa we are finding some countries make it legal to divorce someone if they have epilepsy. And this becomes the grounds for divorce even if epilepsy wasn’t the problem. In other countries we’re seeing there’s a lifelong driving ban, for instance in Caribbean nations, and this becomes discriminatory legislation.

We developed an advocate’s toolkit for reducing epilepsy stigma in Africa. And the timing was perfect because of the passing of the WHO Intersectoral Global Action Plan on Epilepsy and other Neurological Diseases -- what we call the IGAP. In the IGAP, there are some global goals related to improving health outcomes for people with epilepsy. One talks about more access to treatment, and another talks about changing discriminatory legislation. So the IGAP made this the right time, but more importantly the approach for the toolkit was to recognize that we need to empower people with epilepsy because they are the best champions to reduce stigma because they live with it on a day-to-day basis.

So the IGAP was the impetus, looking at the challenges that people face in Africa because of epilepsy stigma became the place that we decided to do our first project. And it’ll be part of what we call the IBE Academy, which is going to be a knowledge hub. And this knowledge hub is to give people with epilepsy around the world the tools to become community leaders.

One of the things I think is really important that is in the toolkit is that we talk about the importance of disclosure. If you live with epilepsy, we want to give you the courage and the tools to tell people you live with epilepsy. Because when we keep this a hidden disability or condition, then governments can continue to discriminate, because they can say, “Nobody really has this condition” or “It doesn’t matter to my constituents.” Health care providers can say, “Well I’m not allocating a budget to epilepsy; it’s not a big deal.” But if people with epilepsy stand up and say, “It is a big deal – it affects me and my family” – then we can see stigma starting to be dismantled.

Dr. Nucera: How can we work on the belief that epilepsy is a contagious disease or that epilepsy patients are possessed by demons?

Secco: So those two concepts came out strongly in the African toolkit because we began with focus groups of people living with epilepsy, and we said, “What are the biggest misconceptions in your community that you believe perpetuate stigma?” And they said, “People believe that someone with epilepsy is contagious.” And when they’re contagious, they don’t want to touch them during a seizure or they don’t want to help them during a seizure because the last thing someone in the community wants is to catch it from them. You can see right there, that’s very culturally based.

Another big challenge with epilepsy in the African focus groups was that people believe that a person who has seizures is demon possessed or bewitched. So I’m going to go back to my original, my thought a minute ago – people with epilepsy have to stand up, they have to tell others that it affects them and their family, because the credibility is in them being members of their community and their community already knows they’re not bewitched or demon possessed but they have to make that connection, they have to say that. We need people to be spokespersons for epilepsy in their communities in Africa, especially in rural communities, explaining to people that I’m not bewitched, this is a brain condition, and when I have a sudden burst of electrical energy in the brain, it causes me to fall to the ground. It has nothing to do with being bewitched and nothing to do with demons.

Dr. Nucera: And on the other hand, what can we do at the level of epilepsy patient care, in particular regarding the traditional medicine in the community?

Secco: Yeah. This was an interesting conversation in focus groups. Two things were interesting – the first was actually the biomedical health care provider often stigmatized. What we were hearing from some participants in the focus groups was that “They know what to tell you but they still treat you differently, as if you are something lesser or not normal.” So we need to be working on health care providers. But the other thing that came up strongly in our focus group is exactly what you just asked about. So the various health providers need to find a way to collaborate despite their differences in beliefs, because people with epilepsy do not perceive them to be mutually exclusive. And they prefer to consult traditional healers and biomedical practitioners simultaneously. So what we need to find is how to get them a proper diagnosis and treatment plan, which would likely be the biomedical one, but how do we work with traditional healers for some of that psychosocial care, because they do that very well. And what we heard was that traditional healers don’t stigmatize. They see this on a day-to-day basis, so there’s a real comfort level for someone from Africa to approach them first. And that’s what came out in the focus groups, they kept saying, “It’s our first port of call – it’s where we go first.” So we need to respect that. If that’s the care pathway that’s already established, we need to respect that care pathway and if anyone needs to compromise, it’s biomedical practitioners understanding how to work within the system that already takes place.

And that was really insightful to me, as a community educator because you do have to go where people are looking for their health care. You can’t assume you’ll build a big structure called a hospital and everybody will come. They may or may not come. So what the focus group was saying that we find it very comfortable to go to our traditional healers, and we would like you now to work with them. There’s some good models too in other conditions, TB, HIV/AIDS, of working together, and it would be really something special if we could do some demonstration projects to see how we could work in partnership.

Dr. Nucera: It’s a really interesting point that I never think before.

Secco: Yeah. Yeah! The traditional healer is the first port of call and to say, “Well that’s not the way we do it” is actually hurting people with epilepsy. They need to go where they go first, and we need to, as people who are champions for epilepsy that want to see the best care possible, say, “So how can we work for you now? How can we make this a system that gets better health for the person who comes to you with seizures, and get better outcomes?”

Dr. Nucera: And as you said before, education plays a crucial role in this topic. What can be done at school level?

Secco: Yeah, education is extremely important because it gives people facts. But education doesn’t always change our behavior or our attitudes. So what we are advising is targeted education. So if um, and because we’re looking for behavior change. So we have to go beyond just providing education and look at the root cause of the problem. In many cases there can be multiple root causes.

So you mentioned school. Is the root cause that the parent is withdrawing their child because they don’t think their child is going to be safe? Is the root cause that the child with epilepsy refuses to go because they don’t want to be teased or bullied? Is the root cause that the school board is making it legal to not teach them? So they’re all different. If the school board has a law that you can’t go to school if you have epilepsy, we have to fight them through legislation and very differently. If it’s a parent withdrawing a child, we have to work with the parent. If it’s a teacher not feeling comfortable, we have to help them feel comfortable. And what became really clear in these focus groups is that it’s not a one size fits all solution. Yes, education is involved in all of those but if the teacher in the classroom thinks the child is bewitched, why would they want the child in their classroom?

It’s looking at all of the ways that we can target that problem. It always involves information, right, but it also involves looking at the root causes for that individual that’s perpetuating the stigma.

Dr. Nucera: And about employment related stigma: What are the steps to reduce this kind of stigma?

Secco: Employment related stigma is very problematic. Because even in higher-income countries where we have laws that protect people with epilepsy, we find people not succeeding at work or not getting jobs. In a high-income country like Canada where you are protected, we coach individuals on when to disclose, how to disclose, if they should disclose at all.

But people will tell us that even when we have laws, sometimes it’s covert. You’ll find somebody saying, “Well I applied for five jobs, told them all I have epilepsy and I didn’t get them – I think they’re judging me and stigmatizing me because I have epilepsy.” Now off to Africa where we did our focus groups, there are no laws to protect them. So if you have a seizure at work you can lose your job, and there’s no recourse. So that’s where an advocate and the IBE community in partnership with the ILAE, we need to be saying, “You need protection to support the workers that have a job so that you can’t be fired if you leave work because you’ve had a seizure.”

It’s a really big, important problem, right. It takes the dignity away from someone that can’t provide work and income for their family. And in many places, it leads to poverty and helplessness. So this is something we need to be looking at as a community.

Dr. Nucera: Women with epilepsy represent an even more stigmatized group. In this case, for this group of patients, what actions could we take?

Secco: Yeah, this is a very big priority of the IBE and I think a global problem. And it’s very culturally based. So women in cultures where there’s arranged marriages or women in cultures where the role of the woman is to have the children and provide for the needs of the family, often times if that person has epilepsy she can be disqualified from those roles. And by disqualifying her, she does not have a lot of options within the community. So if she’s not eligible to marry, if she’s not perceived as someone that could be a good mother, if she’s not perceived as someone that can provide care, food, and nurturing to the family, then what we’re seeing in some lower and middle income countries that have very strong cultural beliefs around marriage is that the women are being banished and ostracized within their community.

So this leads to poverty, and there’s a really good study by Gretchen Birbeck in Zambia of higher rates of rape in women with epilepsy versus those with other chronic conditions – it’s a really big problem. And I think because it’s so big, we need to partner with large agencies, like UN Women, who also have a mandate to promote health equity for women around the world. So I think we need to really look at partnerships when it comes to women, because women who are ostracized from their community are very vulnerable, they live in poverty and very dire circumstances. And this became very clear when we looked at the data and talked to the group from Africa, that probably one of the most penalized groups was women with epilepsy.

Very few African countries actually have health laws to protect people with epilepsy. And more discouraging, those that did often didn’t enforce the laws. So they would sign declarations, they would sign, they ratified laws but they didn’t actually put them in place. But what we can learn from this is important. So knowing this, it’s critical and goes back to why we developed the toolkit. We need to be on top of our governments, be very proactive when we look at implementation of the IGAP because governments can say they’re going to do something, and we know 194 countries unanimously endorsed the IGAP. But they may or may not do anything at all. So it’s up to us, as people who care about the outcomes for people with epilepsy, to continue to keep it on the radar for policymakers, how we can continue to make media know we’re working toward the problem, how we can continue to go to governments and say, “Hey, what have you done? You said you were going to look at your legislation – have you done it?”

So the toolkit from IBE’s perspective was a tool to empower people with epilepsy to ask those important questions. So to know they have the right to good health, they have the right to be included in their community, and that their government signed off on it and said this is important. So it’s to keep them on top of it.

Dr. Nucera: What is the role of social media to communicate the message about epilepsy and stigma?

Secco: Thank you – words do matter. The words we choose to use matter. If you look at the toolkit, we learned from a Brazilian study that when we call people “epileptics,” people stigmatize them more than if it were a person-first approach like “people with epilepsy”. So I think we have to think about the words we use.

And social media is good for us, because it gives us an opportunity to increase general awareness, to share factual information, to counter misinformation, and we should be doing that better. So if someone has said something really ignorant about someone with epilepsy, we should be challenging that right away. But we don’t – we just let it go. So we have to be careful that we use social media for positive, and call out social media when it’s not factual or when it’s negative.

Social media can help us to get public support by highlighting this issue, and social media is a really good tool for targeting youth because It’s their first place to look for health-related information. So I think we have to use it as a tool and be mindful of the fact that when it’s used well and the information is accurate, it’s a great tool, but we have to be challenging when we see misinformation perpetuated by social media.

There’s a lot to do to reduce stigma in epilepsy!

Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.

Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.

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