Stigma can be the most difficult part of living with epilepsy

Stigma affects all aspects of epilepsy care, from diagnosis and treatment to nationwide legislation and budget allocations. It affects the lives of people with epilepsy when they are not given equal access to education, employment, and social opportunities. A population-based study in the United States found that one-third of respondents identified stigma-;not seizures-;as the most difficult part of living with epilepsy.

Last year, the International Bureau for Epilepsy (IBE) published the Advocate's Toolkit for Reducing Epilepsy Stigma in Africa. It's the first in a series of toolkits that will be tailored to regions around the world.

The timing was perfect, because of the passing of the WHO Intersectoral Global Action Plan on Epilepsy and other Neurological Diseases. But more importantly, the approach for the toolkit was to recognize that we need to empower people with epilepsy. They are the best champions to reduce stigma, because they live with it on a day-to-day basis."

Mary Secco, IBE's chair of global outreach and a key participant in the toolkit's production

The resources, ideas, and guidance in the 64-page toolkit come from people with epilepsy, all of whom live in African countries. Their stories are peppered throughout the document, along with practical information, best practice examples, case studies and templates that enhance advocates' capacities to plan and execute effective stigma reduction interventions.

Three types of stigma

All three types of stigma -; internalized, interpersonal, and institutional -; must be addressed in order to close the treatment gap and improve the lives of people with epilepsy, Secco said. And disclosure is a crucial step.

"If you live with epilepsy, we want to give you the courage and the tools to tell people you live with epilepsy," she said. "Because when we keep this a hidden 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, '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."

Stigma stems from misconceptions and fear. Whether it's a child, a teacher, a legislator, or a physician, those who do not understand epilepsy develop alternate explanations for its signs and symptoms.

Stigma as a barrier to diagnosis

Jessie Nyirenda had her first seizures as a young teen. They started as absence seizures and were dismissed by her teachers as an "attitude problem." When they progressed to include motor involvement, Jessie's parents took her to a doctor -; who told them she was throwing tantrums for attention.

Her mother also took her to several churches, in hopes of exorcising any demons that might be responsible for her seizures; later, they visited a traditional healer, who told them that someone in her father's family had probably cursed Jessie. Both Nyirenda and her mother were skeptical of this explanation and did not visit the healer again. But they still didn't have answers.

"In the focus groups of people living with epilepsy, we said, 'What are the biggest misconceptions in your community that you believe perpetuate stigma?'" said Secco. "A challenge is that people believe that a person who has seizures is demon possessed or bewitched. People with epilepsy have to stand up and tell others, because the credibility is in them being members of their community, they have to say, "This is a brain condition… it has nothing to do with being bewitched and nothing to do with demons."

Nyirenda did not know she had epilepsy until 6 years after her seizures began. After the initial flurry of visits to the doctor, churches, and traditional healer, she and her family dealt with the seizures without a diagnosis for several years. When Nyirenda was visiting her sister in the UK, she decided to do some library research on what her condition could be. She came across the term "Jacksonian epilepsy." When she returned to Zambia, she was finally diagnosed.

"I had support from my immediate family; we stood strong and realized that it's a medical condition and I continued with taking the medication," Nyirenda said. "But others 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."

In addition, the physicians that Nyirenda visited were psychiatric specialists, not neurologists -; and because the stigma attached to mental health conditions also is very strong, this affected her. "The doctors I could see were at a hospital where there also was a mental asylum," she said. "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."

Stigma as a barrier to treatment

Focus group members said they often felt stigmatized by Western (biomedical) health care providers, who treated them as "less than." They often visited a traditional healer first, because they said traditional healers do not stigmatize people with seizures.

"People kept saying, 'That's our first port of call,' traditional healers," said Secco. "For us to then say, 'Well that's not the way we do it' is actually hurting people with epilepsy. If anyone needs to compromise, it's biomedical providers understanding how to work within that system." She suggested that collaborative models of care for other conditions, such as tuberculosis and HIV/AIDS, may help provide solutions in this area.

Stigma is particularly detrimental to African women with epilepsy, in that it can affect marriage prospects and parenting, as well as education and employment.

"In cultures where there's arranged marriages, or in cultures where the role of the woman is to have the children and provide for the needs of the family, often times if a woman has epilepsy, she can be disqualified from those roles," said Secco. "And then she does not have a lot of options... 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."

Disclosure counteracts stigma

Nyirenda joined an epilepsy support organization in her 20s, and said that this group, as well as support from her family, shielded her from some of the discrimination that befalls other women with epilepsy in Zambia. "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.' 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?'"

She works as a financial counselor, traveling throughout the country, and has always disclosed her condition to her employers.

"I have photosensitive epilepsy, so the computers would be affecting me because of the flickering lights," she said. "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."

Nyirenda also is a mother of three, and one of her children has epilepsy. His first seizures were similar to hers, and began in his early teens, as hers did. Her experience and knowledge made his diagnosis far easier than hers was.

His teachers began complaining that he was ignoring them in class and not responding to questions. "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."

Addressing institutional stigma

The family did experience stigma, however, from her son's school. "Before he had stabilized, he would have seizures whenever he would get nervous, and the school told me I would have to withdraw him because they didn't know how to deal with it. I would like to see a situation where teachers are more informed, where 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."

Legislation that protects the human rights of people with epilepsy is rare in Africa. Changing this is a major aim of IGAP; its global target 5.2 states that 80% of countries should have developed or updated their legislation with a view of promoting and protecting the human rights of people with epilepsy by 2031.

"Very few African countries have health laws to protect people with epilepsy, and those that do often don't enforce the laws," said Secco. "Knowing this is critical, and one reason 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, 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 keep it on the radar for policymakers," she said. "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?'"