Reaction to a diagnosis of epilepsy may range from guilt, dismay, fear, embarrassment, to regarding seizures as a routine matter. Many individuals with epilepsy and their families withdraw from social interaction and normal activity. However, research has shown that some people with epilepsy have fewer seizures by maintaining an active lifestyle.

Please continue to read this article about the aspects that help people cope with epilepsy, those that are diagnosed and those that are mere bystanders, both need to cope with epilepsy!

PsychoCoping with the Psychosocial Aspects of Epilepsy

While treating epilepsy, it is important to pay attention to coping with the psychosocial aspects and not just the seizure control. The most important thing to do first is to obtain accurate information.

The level of well-being is significantly related to possession of accurate information, in people living with epilepsy. People with epilepsy who are better informed about the management and treatment of their condition, view themselves as being more in control and subsequently have better psychological profiles than those who are less informed. Epilepsy affects each individual in a unique way, obtaining information about your specific situation is crucial. Understanding epilepsy and how it is affecting you can demystify any beliefs you might have about your or your child’s condition and help in the coping process.

Being part of a support group often helps people cope with epilepsy. Whether you are a parent of a child with epilepsy, or an individual who lives with epilepsy, it is important to find people in a similar situation and form a support group to share your experiences. Listening to others in a similar situation breaks the isolation. It helps you see “you are not alone” and that others are struggling with more or less the same issues. It provides an opportunity to learn from and support others. You may gain an insight into your own ways of coping. If there aren’t a support group in your area, you may want to start one. You will be amazed how many people are interested. Many people have also found lasting friendships through support groups.

In the psychological literature, illness behaviour is differentiated from the illness itself. Illness behaviour is one’s unique reaction to an illness. People react to the same illness in many different ways. For some a diagnosis, say, of a heart disease or cancer, may mean complete self-destruction and for others, it may provide an opportunity to attain the highest level of personal growth. Illness behaviour has elements of conscious choice. You can decide that the condition you are dealing with is the worst or the best thing that ever happened to you. You can choose to give up or you can tough it out. You can continue to be angry and devastated, or you can find ways of coping and find what helps you stay calm, even when you are living with an overwhelming condition such as epilepsy. Research has shown that success in treatment of an illness is associated with illness behaviour of the patient and significant others. Your own attitude may influence how well you and your child will cope with epilepsy.

Adjustment to the diagnosis of epilepsy and its impact is a process. It is natural for individuals and families to experience disbelief, anxiety, fear, anger and sometimes depression when such a condition is diagnosed in someone in the family. Understanding and accommodating all the changes that happen takes time. Initially, it is difficult to stop and reflect on what is going on and how to control it. People may feel powerless, helpless and feel like they are blowing with the wind.

It is helpful eventually, to take the time to engage in a process of self-reflection, to explore how epilepsy has influenced you and your family. Exploring its impact on different areas of your functioning (personal, social, vocational, financial and spiritual) can often help in discovering what your strengths and weaknesses are. It can help in identifying what your areas of difficulty are and where you might need support. Acknowledging and discussing concerns with a friend, or someone in a similar situation, is sometimes enough to reorganize such concerns.

It is common for parents, especially mothers, to neglect their own needs when their child is suffering and devote all their energy to supporting their child and the rest of the family. However, it is important to remember that the well-being of children is very closely related to the well-being of their parents or caregivers. Although some children may be naturally resilient, it is usually difficult to have a child accept and cope with epilepsy, if his or her parents continue to be devastated with the diagnosis.

Children may be seen as “the family thermometers” and a reading of their behaviour may provide us with a reading of the family temperature. Parents or caregivers need to pay attention to their own well being, so they have enough energy to take care of their children. They must attend to their own physical needs – nutrition, exercise, sleep and rest. It is imperative to find out what works to keep you calm and relaxed. For some it may be listening to music, reading a good book, for others it may be going for a walk or a swim. Whatever works for you, you must make the time to look after your physical needs. Do not feel guilty about taking the time to enjoy yourself. It is important to rejuvenate yourself, in order to be able to give to others.

Finding a safe place to talk, cry and vent your feelings or dilemmas is crucial. Do not be afraid to admit to negative feelings about your child, family and the systems you are dealing with, to someone you can trust. When words are inadequate to express feelings, explore your creativity – music, art, poetry, photography are some of the media that may help you let your feelings out and share your experience with others. It is important to remember that self-expression helps us move from hurt to healing. It helps us understand what needs to change in our attitudes or behaviour, before we can integrate the ‘unwanted’ into our lives in a meaningful way.

Communicating your needs in an assertive and effective way to family and friends, who are willing, or in a position to help, is important. It is not uncommon for families in distress, to assume that they will be imposing on others, if they ask for help. It is also common for others to feel like they are being intrusive, if they offer help without being asked. So, do not wait for others to offer you help. If you need help, ask. The worst that can happen is you will hear a “No”. If you do not ask, you have already chosen the worst.

Diagnosis of epilepsy may mean a loss of a dream for some parents and individuals. Although that is a fair initial response, it is important for families to reconcile and put epilepsy in perspective. There are many people who have made it to the top, despite having a seizure disorder, for example, Julius Caesar, Alexander the Great, Vincent Van Gogh, Alfred Nobel, and Joan of Arc. It is important to come to terms with the disorder, by viewing it as a part of life and not life itself.

Advocating for your child and for those in similar situations may help channel energy in a positive way. It works better than continuing to be angry with yourself, your family, the system at large, or even God. Above all, exploring your faith and finding the spiritual significance of whatever is happening in your life is crucial.

If, however, you find yourself constantly stressed out, irritable and in conflict with family members or others, you might consider getting professional help. Talking to a therapist or counsellor and receiving their feedback, can provide new insights on how to resolve your difficulties and dilemmas.

For any assistance please contact your closest Epilepsy South Africa Branch on 0860 EPILEPSY (0860 374537)

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