Adults who have epilepsy are more prone to suffer psychosocial problems than those who do not. Difficulties may include high levels of anxiety and expression, poor self-esteem, a low sense of self-management, along with feelings of stigmatization. For those with well-controlled epilepsy, the situation may be more positive as the epilepsy is less likely to diminish the ability to enjoy life to the full.

Some people may need specific treatment, which may include seeing a psychiatrist for clinical depression and taking medication. The depression may or may not be relate to the epilepsy.

anxiety

Anxiety is generally the most common consequence of the unpredictable nature of epilepsy, but only a small percentage of adults develop true phobia anxiety which results in total isolation. Many adults experience sudden anxiety upon diagnosis and some may fear having a seizure, which may lead to death. Anxiety can also occur as part of a seizure and some seizures can be triggered by anxiety itself.

There is clear evidence that individuals with frequent seizures have significantly higher rate of anxiety and depression than those with frequent or no seizures.

Prejudice and ignorance still surround epilepsy. This can lead to social discrimination and some people with epilepsy imagine their condition to be shameful and their determination to conceal it causes them to become anxious. Hiding the condition will, however, do little to modify any prejudices.

depression

Depression is more common among people with epilepsy than those who do not have the condition. What actually causes the depression is unclear though evidence suggests that approximately 10% - 15% of adults with epilepsy will be clinically depressed.

aggression

Historically, aggression has been associated with epilepsy, but there is little evidence to suggest that people with epilepsy are purposely aggressive during a seizure. Where violence has been witnessed, it is usually ‘non-directed’ and occurs as a response to constraint by others during the recovery stage of a seizure. There is no evidence to suggest that epilepsy is more common in violent or aggressive people, or that violence is more common in people with epilepsy.

self-esteem

Self esteem can be significantly lower in those with epilepsy than those without. This is probably due to the way many people think about themselves and the way they imagine others to perceive them on account of their epilepsy. Many people with epilepsy believe that their self-esteem would improve significantly if they did not have epilepsy.

The existence of low self-esteem seems to have a number of possible sources, including family over-protection, perceived stigma and dissatisfaction due to a failure to fulfil expectations.

loss of control

Epilepsy is characterized by loss of control. For gamy people with epilepsy, seizures may occur unpredictably anywhere at anytime with little or no warning. The constant threat of a sudden loss of control, with the fear of loss of bladder/bowel control may lead individuals with epilepsy to believe that they have little real control over many of the important events in their lives, and they may end up attributing events to luck, chance or fate. These beliefs may make some people with epilepsy more susceptible to anxiety or depression.

what can be done to help?

If the epilepsy and the psychosocial problems have been in existence for some time, you should seek professional help from a clinical psychologist or qualified counselor. Contact can be made through the family/hospital doctor. You and your family should gain enough information to make sense of the condition and its management. Early preventative measures, including education and counseling for you, your family, friends and colleagues can put epilepsy into perspective.

You should disclose the condition to friends/acquaintances in a matter of fact way, without being too over-dramatic. This will enable them to respond correctly if you have a seizure, educate them, dismiss any myths and stigma, and enable you to form closer relationships and diminish any feelings of isolation. It is your decision when and what you tell any associates and often it can be helpful to wait until others have had the chance to observe you ‘as a person’ before introducing the subject

It may be beneficial to join a support group and meet with others who have epilepsy, as it can be encouraging to hear the experiences of others. {Contact Epilepsy West Lothian for support Groups in your area}

Depression can increase with boredom and inactivity so you should aim to become more active and take up hobbies.

Knowing you have epilepsy can change the way you think and feel and behave. Equally, the way you behave can change your epilepsy. Strong emotions and feelings can affect the incidence of seizures, so aim to think positively and mange emotions. You have your own abilities, ambitions and qualities and it is incidental that you have epilepsy.

Gaining confidence will influence commitment to self-management. So try not to let epilepsy become an excuse for misfortunes and missed opportunities.

If you feel frustrated about the lack of information/support, play an active role in discussing your treatment. Ask your GP to explain everything you are concerned about. If you don’t fully understand, ask for clarification.

Do not deny the epilepsy, as acceptance is a prerequisite to change.

Be optimistic, as pessimism will affect the outcome.

further reading

‘Living with epilepsy’ by D Chadwick and Susiskin {Macdonald Optima, London 2nd edition 1991}

‘Epilepsy, a practical guide to coping’ by L Sander and P Thomson {Crowood Press, Marlborough 1984}