Throughout life, we are frequently forming different types of relationships with all kinds of people. Many people with epilepsy experience normal healthy relationships, in which their epilepsy causes little or no problems. This may be because of good seizure control, or a very open and accepting outlook about their epilepsy.
Difficulties with relationships
Unfortunately some people with epilepsy may have difficulties forming relationships, particularly if they have previously received negative reactions towards themselves or their epilepsy. Forming new relationships can be difficult for anybody, and life experiences impact on how we deal with different situations.
Some people with epilepsy not have had the opportunities to develop social skills and relationships. A few reasons for this may be attributed to:
- Age when seizures started
- Not accepting the diagnosis and therefore having limited understanding of epilepsy
- Anxiety about having seizures in public
- Fear of rejection
- Missed schooling or not attending school camps or activities
- Parents, family or friends being overprotective and restrictive
- Unable to drive
- Attitude of others towards epilepsy - bad experiences
Juggling a relationship and a chronic condition requires patience and commitment from everybody in your life. Some of the questions that may arise are only partly answered below. As with most aspects of any relationship individual responses and coping mechanisms can vary enormously from person to person.
Education of the significant people in your life is a major step to a successful and happy relationship.
How will my partner and friends react?
This is the most asked question probably because it is the most difficult to answer. People react in different ways, and it is hard to predict how each individual will react. People with epilepsy sometimes wonder whether anyone 'normal'' will be involved with them.
All kinds of questions arise, most of them concerned whether or when the other person should be told. The decision on disclosure is a personal one and needs to be what is best for each person.
If you are considering a long-term partnership, it is advisable to tell the other person about your condition. This does not mean that you should confide in someone on the first date, but discuss this when the time feels right.
It is important for both partners to understand epilepsy, talk to each other about their feelings and concerns and, if relevant, seek outside help or advice.
Epilepsy and sex
Although sexual disorders (both hyposexuality and sexual dysfunction) occur in up to two-thirds of people with epilepsy, many people with epilepsy have a happy, satisfying sex life. A supportive partner who provides emotional closeness and intimacy is a great advantage in helping people with epilepsy feel positive about themselves.
Sexual difficulties may be due to the epilepsy itself, medications, or to reactions of partners and others to the condition.
It may be difficult to discuss this subject, especially with the doctor. But talking about fears and problems related to sex can help overcome these issues and improve your quality of life.
Will epilepsy affect my sex drive?
The desire for sex varies greatly from one person to the next. People with epilepsy are no exception.
Studies indicate that problems with reduced sexual desire and/or arousal may affect a quarter to a third of people with epilepsy.
Although reasons for this are not fully understood in relation to epilepsy, some contributing factors may be:
- The type of epilepsy - temporal lobe epilepsy seems to have a higher occurrence of reduced desire
- Poor seizure control - worrying about having a seizure during sex
- Side effects of antiepileptic medications
- Unable to become aroused
- Painful intercourse
- Fear about disclosure
- Low self esteem, lack of confidence, depression
- Past experiences
- Dysfunctional relationship with partner
- Other medications or medical conditions
- Excessive drug and alcohol use
What to do
1. Recognise the problem
Frequently people do not initially report these problems. Being able to directly talk about sexual difficulties can lead to answers. It is important to discuss this with a health professional (one that you feel comfortable with) and look at options for you and your partner. This can be the hardest step, but don’t forget, this is a problem for many people.
2. Educate yourself and your partner about epilepsy
This can help with:
- Acceptance of the condition
- Understanding about the effects of poor seizure control and sexual drive
- Ways to improve seizure control
- Understanding the effects of antiepileptic medications
- Recognise the impact epilepsy has on your life
- It will also encourage open and honest discussions with your partner.
If you feel the medication is the likely contributing factor, discuss this with the doctor and look at other medication options. Different medications have different effects on each individual.
4. Sex and relationship therapy
If you feel the reasons are more complex than just epilepsy or medications, there are people to talk to about sexual difficulties.
Organisations such as Relationships Australia can help in these areas. They offer a number of services for all types of relationship issues. There may also be some helpful information on Sex Therapy or Family Planning Association.
These are very private and personal issues but discussing and working through your problems helps to resolve them or minimise the impact.
This is the new term for what used to be named impotence. It is when a man is unable to get or keep an erection long enough for him to have intercourse and to satisfy both himself and his partner. This is a common problem for men with epilepsy.
It is estimated that almost a third of all men with epilepsy have difficulty achieving and maintaining an erection at some stage. There are a variety of options available now for management of this problem ranging from counselling, to medications to devices or surgery.
Your doctor or organisations such as Family Planning Association can arrange any necessary tests, treatment or referrals to specialists.
Having a family
The chances that your children will have seizure disorders are very small. The risk increases if both parents come from families with strong histories of epilepsy.
It would make good sense, however, for anyone with epilepsy to consult a doctor who specialises in genetic counselling before having children.
Chronic Illness is Stressful
- Lambert MV. Seizures, hormones and sexuality.
- Seizure 2001 Jul;10(5):319-340. PMID: 11488644.