Adjusting to epilepsy
For many people, receiving an initial diagnosis of epilepsy is an unsettling time. You may respond to the news with all sorts of emotions including disbelief, anger and depression.
Ideally, you can reach a point where epilepsy becomes an aspect of everyday life and not the dominating influence but this adjustment may take time.
There are a range of skills and techniques that can help you to adjust. However, it takes motivation to act on these suggestions and not everyone is at the stage where they can do this on their own. Most of us have times when we feel low and feel that we cannot find the resources to help ourselves. Don't try to deal with it yourself if you feel this way. There are many avenues for support and assistance including the trained counsellors at the Epilepsy Foundation of Victoria as well as your doctor and other professionals such as psychologists and social workers. You may also benefit from talking to someone else who has epilepsy. The Epilepsy Foundation of Victoria can help to arrange this for you.
The skills and techniques described in this brochure have been developed by health professionals and from the experiences of people with epilepsy.
Understand your epilepsy
Understanding your epilepsy will help put the issue into perspective and dispel initial misconceptions. You are also likely to gain the best control of seizures if you are fully informed about the type and particular patterns of your epilepsy.
Being well informed is likely to give you confidence in talking to others about your epilepsy such as health professionals, colleagues, friends and family.
Books and videos that explain epilepsy and its treatment are available at the foundation's library. The Foundation's brochures, ‘Understanding Epilepsy’ and ‘Managing Your Epilepsy’, will offer you a good starting point.
You can find out more by talking with the foundation's counsellors and your doctor.
Talking with your doctor
Good communication is a vital aspect of good medical treatment, enabling you to form a partnership with your doctor and take an active role in the treatment of your epilepsy. Being satisfied with the way your epilepsy is being treated medically and taking responsibility for day to day management, means you are contributing to your state of well being as well as gaining a sense of control.
You can develop good communication with your doctor by reading and learning about the type of epilepsy you have and discussing any questions with your doctor. In particular, you may want to discuss medications, their side effects, and factors which might trigger seizures.
If you find that you are still having difficulty in communicating with your doctor, try to tell your doctor about this concern. If you cannot resolve these difficulties, consider changing doctors.
For some tips about how to improve communication with your doctor, ask for a copy of the Foundation's brochure ‘Managing Your Epilepsy’.
Being open
Choosing the right time and place to tell people about your epilepsy is a sensitive issue. However, if and when you do choose to speak, you are more likely to be relaxed and confident if you are well informed yourself.
You may even influence other peoples’ attitudes and responses by the way you talk about epilepsy with them. Your own openness may help to reduce the stigma associated with epilepsy, by showing people that you are not embarrassed or ashamed. You can help people to better understand epilepsy and show them how to assist you during a seizure.
However, ultimately, you cannot be responsible for other people's behaviour. Getting your epilepsy out in the open is simply a weight off your mind, relieving you of some stress and anxiety.
Being open with people, especially those close to you, can help all concerned to deal with problems when they arise which is likely to increase your sense of control over your life.
If telling your employer about your epilepsy is an issue at work, it may help to read the brochure Employment and Epilepsy, or speak to one of the foundation's counsellors.
Positive self-talk
Your attitude to epilepsy will influence your emotions and behaviour. It is possible to learn to substitute positive thoughts for negative thoughts. For example rather than saying to yourself 'I am going to have seizure’, try saying to yourself 'I'm not going to have a seizure'. The mind is a very powerful tool. Some people find that positive thinking can actually prevent seizures.
Too often, it is our negative experiences which colour our view of the past. Instead of focusing on all the times you have had seizures, think of all the times you haven't and you are likely to find that seizures constitute a small part of your life. It's often a matter of putting things into a more realistic perspective. For example, worrying about having a seizure in a certain situation is actually wasted energy because the seizure may not even occur.
It may also be helpful to deal with negative thoughts by saying to yourself, 'If it does happen it's not the end of the world, I'll continue to be a worthwhile person.'
Explore your options
Epilepsy can lead to lifestyle restrictions for some people. Being unable to drive is a common example. However, for most people with epilepsy the restrictions are few and the choices in life are broad.
Enjoyment and meaning in life are often gained through participation, pursuit of interests and relationships. Think about your options and who can help you make them a reality. Try to enrich your life by doing things you are interested in, things that satisfy you, that give you a sense of accomplishment and a sense of meaning as an individual. Epilepsy is likely to become a less important issue as you become more absorbed in positive, fulfilling aspects of your life.
Discover your own way of coping
Everyone has a different way of coping. Try to capitalise on your own strengths and abilities. Explore what makes you feel good about yourself. Ask yourself, 'When do I feel good and what am I doing to make myself feel good?'. When you have identified these things,and do them regularly you may develop a more positive outlook making epilepsy less significant.
Some ideas for things to do include learning relaxation techniques, playing sport, developing a hobby, joining a group or learning something new. Getting involved can be difficult, so start with something small which will help you gain confidence to take the next step.
Congratulate yourself
Every time you take a positive step towards adjusting to epilepsy, remember to acknowledge the courage and determination you have shown. If you have a day when you feel overwhelmed by the changes in your life, try to be kind and patient with yourself. When you are feeling down, it may be encouraging to look at all that you have achieved and congratulate yourself.
Some words of encouragement
'Recognising I needed some help was my first step toward fulfilment and good health.'
'I am determined that epilepsy will not be the centre of my life. It's just a small part of me that I fit into my life when I have to. I am not an epileptic, I'm a person with epilepsy.'
'Having a laugh about the circumstances I find myself in always makes me feel better.'
'Seeing that I'm stuck with epilepsy, I see having it as a good opportunity to educate people'
'I try to think of epilepsy as one of many disorders like asthma or diabetes which are all part of the wider kaleidoscope of life' |
