You can probably think of at least one time when you changed your plans because you were afraid of a seizure. Or a time when you felt upset for weeks after a seizure with no reason. Or when someone behaved differently around you, perhaps acting as if you were very sick. That someone may even have been someone close to you.
Epilepsy and seizures have probably changed your moods and behavior, whether you realize it or not. How they affect your behavior depends on how long you have had epilepsy and on your stage in life. Changes in your general mood and behavior could happen because of a particular seizure, because of your reaction to seizures or epilepsy in general, or because of the reactions of other people to your seizures or your epilepsy.
Changes caused by seizures
Seizures can cause many long-lasting mood changes. Two of the most common changes are becoming depressed or anxious. These two disorders can be closely related. Some experts say that between 30% and 70% of people with epilepsy have depression, anxiety, or both. So if you are affected by one of these disorders, you are not alone!
Depression and anxiety are each like a puzzle. They can be broken down into many different "pieces," which may vary slightly for different people. A combination of many pieces is usually needed to develop depression or an anxiety disorder. For example, the roots of depression may be made up of different kinds of pieces:
- Genetic influences: Changes in neurotransmitters and hormones, or unusual patterns of sleep and wakefulness
- Problems of attitude: Unhelpful reactions to stressful life events
- Lack of social support: Marital troubles or trouble with friends or family members
People with epilepsy have to deal with two more pieces: seizures and brain abnormalities. These two pieces can cause other problems to appear that weren't there before.
Changes in mood and sexual interest
Some people with epilepsy experience another change—a loss of interest in sex.
- On average, the sexual activity level of people with epilepsy is about the same as for others. Yet some who used to be sexually active find that their sexual interests and activity levels have drastically changed.
- Some researchers feel that there's more to it than just a reaction to a chronic condition. They think that mood disorders in people with epilepsy are related to underlying brain abnormalities.(1) They're still trying to find out whether the brain abnormalities cause the mood disorders, or whether the mood disorders lead to the brain abnormalities.
- Some physical changes caused by hormonal changes or medications may also be related to changes in sexual interest.
Changes caused by your experience with epilepsy
Some people find that the biggest change when they learn they have epilepsy is a change in their quality of life. What is "quality of life"? It has been described as a state of well-being with two components:
- Your ability to perform everyday activities in a way that shows physical, psychological, and social well-being
- Your satisfaction with your level of functioning and with the control of your epilepsy, any symptoms related to treatment, or both.
It's clear from the second half of this definition that two people with about the same number of seizures per week can view their quality of life very differently. Your satisfaction can be affected by mood disorders such as depression, by the types of changes in your life, and by the number of seizures you've had recently. In fact, depression is the greatest predictor of your quality of life.(2)
- For people with temporal lobe epilepsy, the major stumbling blocks in the way of achieving a good quality of life seem to be feelings of dependence, emotional impairment, and less developed coping skills.(2)
- Other studies have looked at all people with epilepsy and have found the leading factors to be loneliness, adjustment, coping, psychological distress, and perception of stigma.(3)
- Stigma is a feeling of discrimination or persecution that we experience when we don't conform to standards. Even if true acts of discrimination by others are not common, a person may feel stigma and get less enjoyment from life as a result.
A new diagnosis of epilepsy is a major event that can dramatically affect your quality of life if you previously valued your health, strength, and mind.
- You may feel that your health, strength or mind are not as dependable now. You don't know what to expect.
- You have new "work" to do—managing your seizures, taking medications, and so on.
- Positive aspects of your self-image (how you see yourself) can disappear, without being replaced by other, equally valued positive aspects.
- Situations and places that seemed safe and brought joy can instead cause panic and fear of seizures.
- All these changes can affect your quality of life. A large part of your 'work' now is to find new ways of coping with the epilepsy and how it affects your life. And how not to let epilepsy stand in your way.
Changes caused by others' reactions to your epilepsy
The reaction of other people to your epilepsy may also affect your mood. The reaction of your family is crucial. If you have a job or are looking for one, the workplace is another area where others' reactions can make a big difference.
Many of you have most of your social interactions with your family, so how your family members react to your epilepsy makes a huge difference in how satisfying your life is. Ideally, your family and friends should treat your epilepsy as an occasional inconvenience rather than a perpetual tragedy, especially if your seizures are well controlled. If they adopt the "tragedy" attitude instead, you could end up playing the "sick role," being monitored (and over-monitored) constantly, or you may come to feel responsible for family problems.
If you're married, you may be worried about your spouse's reaction. One survey showed that one-third of people diagnosed with epilepsy after marriage didn't tell their spouse about their epilepsy.(5) Another one-third used vague terms such as "attacks" or "dizzy spells" to avoid mentioning epilepsy or seizures. But epilepsy doesn't have to damage or end marriages. If both partners can talk openly about what epilepsy is, identify problems created by seizures, and find ways to minimize the impact of seizures, unwanted tension can disappear and a new level of trust and closeness can develop.
Social workers, psychiatrists, and psychologists are available to help with family issues caused by epilepsy. Family members who are having trouble coping with your epilepsy also may be greatly helped by joining one of the many support groups available for people in similar situations. Online chat rooms and forums can help too.
Fear of facing discrimination or of being fired prevents many people with epilepsy from telling their employers about it. Sadly, this fear is not unfounded; one study found that 18% of those who told employers faced discrimination.(4) Another study found that employees had trouble finding and keeping a job 40% of the time when the employers knew about their epilepsy.(5) Clearly, some employers are basing their behavior on misperceptions about epilepsy.
Even having had absence seizures, which many consider to be mild and non-threatening, can have an impact on your occupation. One study showed that people with a history of typical absence epilepsy were employed fewer months in a given year, had poorer job satisfaction, and were in more unskilled positions than people with a history of juvenile rheumatoid arthritis, a comparable medical condition.(6)
- Schwartz J. The social apraxia of epilepsy. In Sackarelles JC, and Berent S (eds): Psychological Disturbances in Epilepsy. Butterworth-Heinemann: Boston, 1996, pp 159-171.
- Lehrner, J, Kalchmayr, R., Serles, W, et al. Health-related quality of life (HRQOL), activity of daily living (ADL) and depressive mood disorder in temporal lobe epilepsy patients. Seizure 1999: 8(2): 88-92. PMID: 10222299
- Suurmeijer TP, Reuvekamp MF, and Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy.Epilepsia 2001:42 (9); 1160-1168. PMID: 11580765
- Trostle J. Social aspects: Stigma, beliefs, and management. In Engel J Jr and Pedley T (eds): Epilepsy: A Comprehensive Textbook, vol. 2. Lippincott-Raven, Philadelphia, 1998, pp 2183-2190.
- Lechtenberg, R. Epilepsy and the Family: A New Guide. (Harvard University Press: Cambridge, 1999), p 17.
- Wirrell, E.C., Camfield, C.S., Camfield, P.R., et al. ;Long-term psychosocial outcome in typical absence epilepsy: Sometimes a wolf in sheep's clothing. Archives of Pediatric and Adolescent Medicine 1997: 151(2): 152-158. PMID: 9041870