Epilepsy has major effects on families of people with the disease, says Ramon Bautista, M.D., M.B.A., an epileptologist from the University of Florida Health Science Center in Jacksonville. He is the principal author of a recent Epilepsy & Behavior study that examined the condition’s emotional and social impact on the family. We asked Dr. Bautista, professor and associate chair of the university’s Department of Neurology and medical director of its Comprehensive Epilepsy Program, to discuss epilepsy and family relations.
How can epilepsy affect family members?
Much attention is paid to how epilepsy patients are coping with their condition, and rightly so. But often those who also live with epilepsy every day family members, loved ones, caregivers can get ignored. In a way, they also suffer from epilepsy. Parents, spouses, siblings and children of people with epilepsy have to witness their loved one deal with a serious medical condition and help care for them. They may have many days that are turned upside down due to the unpredictability of seizures.
How can it impact family relations?
If the condition isn’t well understood by family members, and its medical and social issues aren’t addressed adequately, epilepsy can cause serious problems for the entire family. The family can become socially isolated, exhausted and stressed. However, when families take the time to learn about epilepsy and develop coping mechanisms, they react more positively, and in the end the condition helps strengthen the commitment family members have to one another and actually brings families closer together.
Can family support enhance the feeling of self-worth in people with epilepsy?
A person’s self-esteem is very much affected by how family members react to them. If family members show you that, despite having epilepsy, you are important, you’re still one of us and we love and care for you, this can tremendously boost self-esteem of individuals with epilepsy and can enhance their belief in their ability to live a meaningful life. In this way, the family can also play a key role in helping ease stigma. In contrast, if the family tends to hide the fact that one of their members has epilepsy, this can increase a patient’s feelings of worthlessness and stigma.
What help is out there for families?
In our epilepsy center, we have a regular support group in which patients, family members and other caregivers come together to learn more about the condition. We find that usually more family members than epilepsy patients go to these support groups. By attending, they hear about what other families go through, and get information and practical ideas on how to better care for a family member with epilepsy. Also, by developing a deeper understanding of what epilepsy is, they become more supportive of their affected loved one, and any resentment between the patient and other family members who feel they don’t get the same amount of attention actually decreases. It also helps families and patients get up-to-date about epilepsy. Support groups also help families and patients learn about the latest medical updates, and how they may be useful to their loved one.
Ramon Bautista, M.D., M.B.A, is an epileptologist from the University of Florida Health Science Center in Jacksonville. Visit epilepsy.com to read topics on related issues.
Originally printed in EpilepsyAdvocate, Fall 2017.