Health Care Review: Supporting People With Seizure Disorders
Seizure disorders, more generally called epilepsy, are a common yet often-misunderstood medical condition. They range greatly in severity and, as a result, can vary in the impact they have on an individual’s functioning, independence, growth, and overall well-being.
For those with epilepsy, it is vital that they receive appropriate care—care that takes into account the fact that such a disorder isn’t limited to the physical. Behavioral health issues are often seen in individuals with epilepsy and can stem from the realities (or fears) of what living with epilepsy might mean.
The care team, as a result, must include professionals with knowledge and understanding about the complexities of the disorder. The team at an epilepsy center or in an epilepsy department typically consists of, among others, a neurologist, neurosurgeon, neuropsychologist, nurse, and, in some cases, a social worker.
When utilized, social workers are uniquely positioned to help individuals and their families connect with the support and normalization needed to navigate this chronic disorder.
“An epileptic seizure happens due to abnormal rhythmic electrical activation of adjacent brain cells that evolves over time and space; this may or may not impair consciousness. Epileptic seizures are usually time limited and stop of their own accord. Epileptic seizures may vary from easily recognized convulsions to barely perceptible eye-fluttering, spacing-out spells, or funny feelings that other people do not notice,” says Molly Warner, PhD, ABPP, a clinical neuropsychologist and clinical associate professor at Seattle Children’s Hospital. “If brain cells start to pulse together all over the cerebral cortex at the same time, this is called a generalized seizure. If the rhythmic electrical activity starts in one part of the brain, this is a focal seizure that may or may not spread to other parts of the brain.”
The fourth most common neurological disorder, according to the Epilepsy Foundation of America (EFA), a seizure disorder is “defined as two or more seizures that are not provoked,” Warner says. She explains that a seizure triggered by a diabetic crisis, for example, is considered a provoked seizure due to metabolic abnormality. Unprovoked seizures happen due to spontaneous abnormal coordination of electrical activation of brain cells.
The frequency and severity of the seizures vary from person to person and affect a wide-ranging population. Seizures can happen in infancy, as an older adult, and at every age in between. Causes of epilepsy include genetic conditions, abnormal brain development, illnesses affecting brain tissue, brain tumors, strokes, or traumatic brain injuries.
“It doesn’t discriminate,” says John Figueroa, CSW, a social worker at New York University Langone Health’s Comprehensive Epilepsy Center. “Across the board, epilepsy is epilepsy.”
Although an estimated “two-thirds of all children will outgrow their seizures by the time they are teenagers,” epilepsy is considered a chronic disorder with long-lasting effects (HealthyChildren.org, 2016). Many adults live with it today, and many children currently diagnosed will do so through their adulthood, as well.
Severity and thus physical impact of epilepsy is different with each individual. The majority of people with epilepsy are normally functioning and manage their seizures simply with medication. Others may be on the opposite end of the spectrum; people with devastating brain conditions may not be able to walk, talk, or feed themselves, requiring round-the-clock care.
“[Asked] to make a general statement about epilepsy,” Warner says, “the answer is almost always, ‘Well, it depends.’”
In children and adolescents in particular, it is likely that behavioral issues at school or with friends may arise. Additionally, social isolation and, sometimes, even agoraphobia can develop in individuals with epilepsy.
It is impossible to predict how each individual will be affected by their diagnosis. However, it is possible to understand some of the underlying factors that can contribute to behavioral and mental health issues.
For one, a diagnosis of epilepsy is one that comes with a great deal of unpredictability. “When you have epilepsy, your social interactions change. You cannot control an epileptic seizure,” Figueroa says. “They come when they come. You could be at dinner with your loved one, and all of a sudden, you’re having a seizure and you’re convulsing. People are looking at you like, ‘What the heck is going on here?’”
As a result, he says, people with epilepsy think about their seizures before they happen and after they happen. It is a diagnosis that lingers in one’s mind.
Furthermore, a seizure disorder automatically leads to some forms of social isolation. For example, all states have rules surrounding when or whether an individual with epilepsy can drive. In Pennsylvania, a licensed physician must certify that the potential driver has been free from seizure for, at the very least, the six months prior. There are some exceptions, such as if the individual only experiences nocturnal seizures or seizures immediately upon waking. But ultimately, such a restriction will limit the mobility and, therefore, independence of a person.
For youth, there can be restrictions at the school and extracurricular activity levels. “A child entering adolescence may suddenly have to start taking medications, may be told by the doctor, ‘No, you can’t go swimming,’ or ‘You shouldn’t play football,’” Warner says. “Those sorts of prohibitions—intended to keep them safe—might also isolate them from friends.”
Even without restrictions, the stigma of having a seizure and the societal lack of understanding about what epilepsy is can isolate an individual of any age.
“Other people may react to seizures themselves by being scared of them and may pull away from people who have seizures because they don’t understand what is happening,” Warner says.
Figueroa agrees, adding that misconceptions about seizures can be dangerous. Often, when individuals respond to a person experiencing a seizure, they may not recognize what’s happening or may respond incorrectly based on misguided information. This can lead to the individual getting hurt.
Thus, it is not difficult to understand why or how a person may withdraw socially, develop anxiety or depression, or begin to behave differently than they did prior to the diagnosis.
Social Work Role
Such breadth might not be the norm for other social work positions. As a result, it can be difficult to pinpoint exactly what a social worker should do when working with individuals with epilepsy. But there are overarching themes that social workers can focus on when they work with this patient population.
First, connection is important. Patients need to be connected with appropriate resources for ongoing outpatient treatment, support, and education. Warner notes that many of her patients are referred to their local chapter of the EFA. The EFA offers a wide variety of information, as well as a Helpline and access to support services, such as summer camps for children and a variety of support groups.
“I think it’s really important to get to know people with the same issues,” Warner says. “It’s really easy to feel isolated.” She adds that while many hospitals have support groups, not every patient lives near the hospital—possibly not even in the same state—making participating in those groups difficult. Connection to a local EFA chapter can help foster more local support.
Social workers should also focus on education. The internet is full of information about epilepsy. Not all of it will apply to every individual; in fact, most won’t. Social workers can help individuals and their families sift through it to locate the facts they need.
Additionally, social workers must recognize that it’s not just the individual who needs support; the family does as well, particularly when the individual diagnosed is a child or a person who will require ongoing care from their family members through adulthood. With the family, connection to resources and support, as well as education, are equally as important.
Above all, Warner and Figueroa say, social workers should aim to normalize. “Normalize the experience of epilepsy. It’s a disease, like anything else you can have. Make sure that they’re okay,” Figueroa urges.
With the right support from a care team, including a social worker, individuals and their families can navigate a seizure disorder without feeling alone.
— Sue Coyle, MSW, is a freelance writer and social worker in the Philadelphia suburbs.
International League Against Epilepsy. (2019). More than seizures: In people with epilepsy, social anxiety affects quality of life. Retrieved from https://www.ilae.org/journals/epigraph/epigraph-vol-21-issue-1-winter-2019/more-than-seizures-in-people-with-epilepsy-social-anxiety-affects-quality-of-life.