Throughout life, we form new relationships with all kinds of people.
Everyone is on their own journey with epilepsy, but there is no doubt that at some point many of you have felt left our or isolated.
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 with epilepsy are uncomfortable or reluctant to tell them or sometimes it’s hard to find the words to explain.
Social isolation can happen for many reasons: fear of having a seizure in public, people’s reactions to a seizure, or simply because someone is unable to get a driver’s license and they are living in a place inaccessible to transport.
There are some people with epilepsy who have not had the opportunities to develop social skills and relationships. This may be because:
- seizures started quite young or during a difficult period such as puberty
- they have not accepted their diagnosis and therefore having limited understanding of epilepsy themselves
- of anxiety about having seizures in public
- of fear of rejection
- of missed schooling or not attending school camps or activities
- of parents, family or friends being overprotective and restrictive, or even self-imposed restrictions
- they are unable to drive
- of bad experiences with others attitudes towards epilepsy or seizures
Be open with your closest friends and family so they know what you are going through. Education of the most important people in your life is a big step to successful and happy relationships.
Don’t try to meet others expectations
Although it’s not healthy to completely socially isolate yourself, if you feel you don’t have the energy, or want to limit your activities to better look after yourself, don’t feel you need to meet the expectations of others. If you can’t maintain as many face to face relationships, there is still online communication.
Focus on the people that are most important to you
It really comes down to being open with people close to you, and discuss any changes that you need to make. They won’t understand how you’re feeling if you don’t tell them.
You are your own person, and others have to accept things might be different for you sometimes. However, never take your close friends and family for granted and be aware your condition may affect them also. Give and do what you can to show that they are still important to you.
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, advice and support or meeting potential partners.
Don’t leave it up to others to always contact you, it’s 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.
How will my partner and friends react to my epilepsy?
People react in different ways, and it is hard to predict how each person will react. Because epilepsy is not a visible illness, people sometimes don’t realise the impact it can have.
Your decision to tell others about your epilepsy 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 it. 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
Having epilepsy does not mean you can’t have a normal intimate relationship. Many people with epilepsy have a happy, satisfying sex life.
Problems with intimacy and sexual difficulties happen to everyone. With people with epilepsy, these problems may arise due to the physical or psychological impact of epilepsy itself, medications, or to reactions of partners and others to the condition.
Many people are hesitant to discuss sex, especially with the doctor. But talking or taking action about fears and problems related to sex can help overcome these issues and improve your quality of life. We have provided some links to other services (below) that may be useful.
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 about 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
- difficulties within the relationship
- other medications or medical conditions
- excessive drug and alcohol use.
This is the term for what used to be called impotence. It is when a man is unable to gain or keep an erection long enough for him to have intercourse and to satisfy both himself and his partner. This seems to be 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 (not all the time). 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 Men’s Health Clinic can arrange any necessary tests, treatment, counselling or referrals to specialists.
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 solutions or improvements. It is important to discuss this with a professional (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
- open and honest discussions with your partner. It’s possible your partner is concerned about you having a seizure during intercourse as well.
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 person but some do have side effects that affect libido.
If you feel you are suffering from depression, or are medicated for depression, be aware that chronic depression and some depression medicine curbs your sex drive (libido), yet intimacy and sex can boost your mood and is important for relationships.
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 Sexual Health Australia or Family Planning Alliance.
These are very private and personal issues but discussing and working through your problems helps to resolve them or lessen the impact.
Having a family
The chances that your children will have epilepsy 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 see a doctor who specialises in genetic counselling before having children.
For More Information:
Livewire for peer support for youth with chronic illness