Throughout life, we are frequently forming different types of relationships with all kinds of people.
Sometimes people with epilepsy can feel different. Even for people who are working or participate in sports and social events, there may still be a sense of being set apart. These feelings may be compounded because family, friends and colleagues may not seem to understand what it’s like living with epilepsy – and many people are uncomfortable or reluctant to tell them or sometimes it’s hard to find the words to explain.
Social isolation can happen because of fear of having a seizure in public, peoples reactions, or simply because someone is unable to get a drivers license and they are living in a place inaccessible to transport.
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 the 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
- As epilepsy is often misunderstood by people who have not come into contact with the condition, disclosing details of your own condition may cause concerns.
Forming new relationships can be difficult for anybody, and life experiences impact on how we deal with different people and situations. Without a doubt, epilepsy and many other conditions can present challenges to relationships. Getting a diagnosis of epilepsy could mean that existing relationships may need to be renegotiated and new relationships may seem more difficult to develop.
When you have a chronic disease, your friendship network may become smaller, but usually stronger. Some people will stick around and others may drift away. This can leave you feeling abandoned or rejected by these people. In reality, it is a normal part of life, and people frequently come and go in everyones life.
Don’t try to meet others expectations
If you feel you don’t have the energy that you used to have, or want to limit your activities to better look after yourself, don’t feel you have to meet the expectations of your friends and family. If you can’t maintain as many face to face relationships, there is still online communication. Focus on the most important people to you first. It really comes down to being open with other people and discuss any changes that you need to make. They wont understand how you’re feeling if you don’t communicate it.
You are your own person, and they have to accept things might be different for you now, and accept you as you are. However, never take your close friends and family for granted. Be aware your condition affects them also. Give and do what you can to show that they are still important to you. Be aware that all of the problems of normal life continue and that they still have to cope with them, as well as you with your problems.
Connecting with others
Source some online social support groups or networking. There are many people in similar situations and the internet is a great tool to get connected with other people for sharing experiences, support or meeting potential partners.
Keep in touch with close friends and family. Don’t leave it up to others to always contact you, its a two way street and it doesn’t hurt to touch base with those who you like and care about.
Keep up with activities that you enjoy when you can.
Juggling a relationship and a chronic condition requires patience and commitment from everybody. Some of the questions that may come up are partly answered below. As with most aspects of any relationship individual responses and coping mechanisms can vary enormously from person to person.
Be open about your condition so your close friends and family know what you are going through. Education of the most important people in your life is a major step to successful and happy relationships.
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 person will react. Because epilepsy is an invisible illness, people sometimes cannot comprehend the impact it can have on your life, no matter how much you explain.
Your decision on disclosure is a personal one and needs to be what is best for you.
If you are considering a long-term relationship, it is best to tell the other person about your condition. This does not mean that you should confide in someone on the first date, but discuss it 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 low sex drive 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 physical or psychological impact of 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
- Recognise there is a 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.
- 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 your 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.
If you are suffering from depression, or are also medicated for depression, be aware that chronic depression curbs your sex drive, yet sex can boost your mood and is important for relationships. And some depression medicines can curb your libido also. However it is very important to treat the depression first, so if you feel the depression medication is affecting your libido, then discuss this with your doctor.
- 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.
For further information:
Epilepsy Parents Australia support group
Epilepsy/seizure support and discussion support group
Livewire for peer support
Epilepsy.com has many forums where you can post questions to peers