People with epilepsy get married, have children, and enjoy satisfying family lives just like everyone else. In fact, a recent Swiss study shows that loving relationships are particularly important in enhancing the lives of people with epilepsy – and in helping caregivers feel better, too. The study involved 104 people with epilepsy (PWEs) and their caregivers. All of the caregivers were family members and nearly a third were spouses.
Researchers found that people fared better in relationships in which the person with the disorder felt nurtured and where there was open communication about the condition. Those people’s quality of life, measured by factors such as emotional well-being and social functioning, was high regardless of the types of seizures he or she had. And a surprising outcome: Emotional wellness in the caregiver was positively affected by the emotional well-being of the spouse. Some may think it doesn’t take a scientific study to tell you that, just as in any marriage, give and take improves the situation; but then again, it’s good when a study does show that if your partner feels good, you feel better too.
Here are ways to make sure your relationship is stronger than the disorder.
The study showed that people with epilepsy (PWE) who knew the most about the disease, medications, and various treatments scored best on emotional well-being. Sometimes it’s up to the spouse to learn about the disorder and relay the information so that both partners can discuss it and be proactive in treatments. Findings show that talking about treatments and medications improves well-being.
Recognize your feelings.
With a diagnosis of epilepsy comes new feelings in both caregiver and the person with epilepsy. “How different will life be?” “I feel so helpless.” “Will I have to take care of this person forever?” First, you aren’t helpless; there are practical approaches you can take to help. Second, 75 percent of people with epilepsy have their seizures under control with antiepileptic drugs (AEDs) and can be self-reliant. So your feelings, while important and real to you, may not be facts. Talk them out with a health professional.
Spend quality time together.
Time together is too often spent in doctor’s offices, handling medical bills – or it’s tied up with regular household chores. It’s important to balance these with positive recreational activities for both of you. There might be new restrictions, but something like a walk in the park can be reinvigorating. And getting out has another therapeutic benefit: According to the Swiss study, it serves to undermine isolation, a factor that can lead to depression.
Don’t forget about sex.
You don’t have to stop functioning sexually, although people with epilepsy and their spouses do have special issues with which to contend. Some people with epilepsy, especially those with complex partial seizures, are prone to a lower sex drive, often due to medication but sometimes due to anxiety or depression. If this is the case, check with your doctor to discuss a possible change of medication or other alternatives. Some people shy away from sex, thinking that intercourse might cause a seizure. Although not much research has been done on a relationship between seizures and sex, Langone Medical Center in New York University states that there is no convincing evidence that sex brings on seizures.
When epilepsy affects employment or driving, it’s important to look at other contributions to the household that are just as important: helping kids with homework, safely helping in the kitchen, or taking care of household paperwork. Most important, don’t keep a running tally of who’s doing what. Remember that each person contributes in his or her own way.
Deal with the depression.
Depression is a serious factor among people with epilepsy – and their caregivers. Make sure you and your loved one are tested and given appropriate treatment.
Extend your network.
The more social support the better, according to the Swiss study, and people with extended networks of friends and family feel better emotionally and function better than those without.
Get involved in a support group.
Support groups are vitally important for both caregivers and the people with epilepsy. They provide a sense of community, introducing you to people with the same challenges and giving you access to more information.
Get some space.
All marriages and relationships need it: Get a friend or relative to spell you and take some alone time. Go to the movies, see friends, or go to a quiet place and mediate. Some time on your own is good for each of you and keeps the caregiver from being overprotective, reducing caregiver burnout. It also helps the person with epilepsy be more self-reliant.