When people with epilepsy are more satisfied with their intimate relationships, they are also more likely to manage their condition better, according to a study from the Kinsey Institute at Indiana University Bloomington and the IU School of Nursing at IUPUI.
The IU study recently published in the journal Epilepsy & Behavior provides an increased understanding of the significant role that intimate relationships can play in the lives of people with epilepsy. Data gathered from a survey of 88 people with epilepsy revealed that intimate connections with others are a common concern, and many have difficulties navigating and maintaining relationships.
About 4 million, or 1 in every 26 people in the U.S., will be diagnosed with epilepsy in their lifetime, according to the Epilepsy Foundation of America. Each day, people with epilepsy and their families use self-management measures like regularly taking medication or monitoring their stress levels to manage their symptoms. If a person with epilepsy isn’t satisfied with their intimate relationships, it could have a negative impact on the person’s self-care.
“One of the most important factors in predicting outcomes for a patient is self-management, ” said Wendy Miller, associate professor of nursing at IUPUI and one of the study’s authors.
With greater understanding of the significance of relationship satisfaction in the lives of people with epilepsy, medical professionals can provide better support to patients who may benefit from learning skills to help them maintain healthy connections with partners and strengthen their intimate relationships, thus increasing the chances that they will have better health outcomes.
While the beneficial impacts of romantic relationships have been observed in the context of a number of conditions and disorders, little research has focused on the relationships of people with epilepsy, Miller said.
“We know satisfaction with intimate and sexual relationships can have a large impact on any individual’s well-being, but what is less understood is how much it can affect people with epilepsy,” said Amanda Gesselman, associate director for research at the Kinsey Institute and lead author of the study.
“Romantic and sexual relationships have a lot of impact on mental and physical well-being,” she said. “We found that for people with epilepsy, the emotional component of relationships and sexual satisfaction has been linked to better adherence to medical treatment, healthier diets and exercise.”
When Gesselman and Miller collaborated for this study, they benefited from a previous partnership between the Kinsey Institute and the IU School of Nursing. In 2017, they co-authored a study that analyzed data from internet message boards to identify key concerns related to romantic and sexual relationships for people with epilepsy.
“Leveraging the sexuality and relationship research and the data collection expertise from the Kinsey Institute with the innovative research on health management and epilepsy from the IU School of Nursing was a great opportunity to collaborate and look at how these research areas intersect to answer important questions that directly impact on the daily lives of people with epilepsy,” said Justin Garcia, executive director of the Kinsey Institute and an author of the study.
These studies on intimate relationships and the role they play in the lives of people with epilepsy can apply to individuals with other chronic illnesses, Miller said.
“Chronic disease is the number one health issue in the United States, and the necessary treatment over time can be a great expense for patients,” she said. “If we can empower people to self-manage their illnesses better, it could impact the entire health system.”
Rachel Wion, a post-doctoral fellow in the IU School of Nursing who is mentored by Wendy Miller, was also an author of this research, which was funded by the Barron Quality of Life Award, a grant from the IU School of Nursing and conducted in collaboration with the Epilepsy Foundation of Indiana.