Relationships & Epilepsy: Exploring the Challenges
“Relationships are the most important part of our lives. They are what sustain us and bolster us in both joyful and trying times. And yet, within the confines of a physicians’ office, relationship issues tend to get overlooked,” said Patricia Gibson, MSSW, Wake Forest University. As a psychiatric social worker specializing in the treatment of people with epilepsy, Gibson is well-versed in the challenges faced by both clinicians and their patients in discussing relationship and sexual issues. Epilepsy.com had the opportunity to talk with Gibson to discuss the complexities of living with epilepsy and explore the impact epilepsy has on relationships in varying degrees.
Do you think relationship issues are addressed by doctors treating people living with epilepsy?
With the increasing demands on doctors, many of them have difficulty just addressing the complexities in the medical management of epilepsy, let alone addressing the psychosocial issues, including those pertaining to relationships. In comprehensive epilepsy centers, there are more resources, but even in these centers there are often limitations in the social services offered.
The sad truth is the emotional and social aspects of living with epilepsy are often not addressed in-depth, although they are very important. There are numerous articles from early on pointing out, as Dr. Samuel Livingston did in 1977, that “it has long been recognized that the social, psychological and behavioral problems that frequently accompany epilepsy can be more handicapping than the actual seizures.” The Presidential Commission on the Study of Epilepsy and its Consequences in 1976 stressed this need as well. Sadly, funding for this aspect of care has been woefully lacking.
To your knowledge, is there a link between anti-seizure drugs and sexual desire/performance?
Yes, some of the medicines that are used in the treatment of epilepsy do have side-effects of sexual dysfunction. We also know that the underlying problem causing epilepsy can contribute to these problems as well.
The fascinating thing to me is to observe how each individual person reacts to a given medicine. While one medicine may cause a problem in one person, that same medicine may work beautifully with minimal or no side-effects in another. In fact, there have been a number of studies showing a link between certain antiepileptic drugs (AEDs) and hormonal changes leading to a decrease in sexual libido or desire.
In my own clinical experience, I have had a number of clients who experienced difficulty in sexual arousal that was linked to the AED they were taking. One client lost his business after developing epilepsy because of the cognitive difficulties that developed after taking antiepileptic medicine including depression, lethargy, weight gain, and loss of libido. His marriage also suffered as a result. When we started our counseling sessions, he confided about these issues and admitted he had not discussed them with his neurologist. So I suggested he talk to his neurologist about switching to another AED. After switching to an alternative AED, his mood and libido improved greatly. He has since found a new job and is doing well at this time.
How does epilepsy affect a person’s ability to have and maintain interpersonal relationships?
I think it is important to point out that seizures are symptoms of an underlying brain disorder, and this underlying brain disorder can affect other aspects of a person’s life resulting in various difficulties or co-existing disorders that can further complicate relationships. Having said that, I think how well a person is able to integrate epilepsy into their identity has a lot to do with how emotionally healthy he or she is to begin with. There are a number of factors that affect this identity integration, including
- The nature and severity of the seizures
- The presence of other handicapping conditions
- The social, emotional, and financial stability of the family of the person
- What support systems are in place
How the person perceives the epilepsy is a big factor. Does the epilepsy color their whole being or is it just one part of who he or she is? For example, I had a client who so feared discovery of his diagnosis that he broke off a relationship with a young woman he loved very much. He was afraid that she would reject him and worried that others would find out and his professional life would be ruined. This man’s perception of his epilepsy loomed large and his decisions were all made on his “perception” of what might be.
In my experience, revealing the diagnosis is more likely than not to prompt a response of, “Oh really? My mother, aunt, cousin…has epilepsy. What medicine do you take?” It is important that we reach those with epilepsy at the onset of diagnosis and make every effort to prevent this shame and promote a healthy adjustment. It has long been of great interest to me to observe how some people cope so well with epilepsy while others struggle with the diagnosis. While we understand some of the factors involved, there is still much to be learned in this area.
When do you think a person with epilepsy should tell the person they are dating that they have epilepsy?
Telling someone you are dating that you have epilepsy is something I think you should divulge if your seizures are not well-controlled or if you are moving into a more serious relationship. If you are dating someone and your seizures are not well-controlled then it is probably best in terms of safety to tell your date and to discuss first-aid.
The manner in which this is delivered has a lot to do with how the person will respond. You need to feel confident and easy in imparting this information as if it is no big deal. Invite questions.
If your seizures are well-controlled then I think it is a good idea to talk about your epilepsy when you feel your relationship is moving in a more serious direction. This is a natural evolution in sharing and intimacy in relationships.
Do you have any words of wisdom for people with epilepsy who are experiencing relationship difficulties?
First, be aware that everyone has difficulties with relationships. Anyone who hasn’t had a problem probably hasn’t really had much of a relationship. I know of no one who hasn’t made errors in establishing relationships. Mistakes are information about what works and what does not work. They have nothing to do with self-worth; they are merely steps to a better relationship.
Also, it is helpful to find someone you trust to talk to about your relationship. Talking always helps when we are going through a difficult time. A good friend, counselor, or other person you trust may help you sort out your feelings and get a different perspective on your situation. In telling our story, we often become “masters” rather than victims of our life.
Establishing and maintaining relationships are not easy for anyone. According to Merle Shain, “there are only two ways to approach life — as victim or gallant fighter — and you must decide if you want to act or react, deal your own cards or play with a stacked deck. And if you don’t decide which way to play with life, it always plays with you.”