To understand the issues faced by people living with epilepsy, we need to explore psychosocial issues. The term "psychosocial" is very broad. It includes all sorts of aspects of our daily life, such as social relationships, adjustment to school or work, emotional functioning and mood, family, self-esteem, social support, feelings of control over one's life, etc. Psychosocial factors contribute to the quality of life of people living with epilepsy. Those factors that play the biggest roles will be discussed, concluding with ideas for coping and treatment of these issues.

Traditionally, the treatment of epilepsy has focused on the medical side of the disorder and achieving seizure control through drug therapy. However, recently the medical community has begun to acknowledge that there is more to treating this disorder than simply treating its medical components. Psychosocial issues also have to be addressed. Though the majority of people with epilepsy attain seizure control through drug therapy, over 40% do not gain control of their seizures and must live with them on a daily basis. Statistics show that over 85% of the cost associated with the treatment of epilepsy is attributable to non-medical factors, such as lost productivity at work, educational training, or treatment of emotional difficulties. It is clear that the impact of seizures on people's daily lives has been, for the most part, underestimated, and this brochure is designed to increase our awareness of these non-medical, everyday, psychosocial concerns that can affect people with epilepsy.

• Parents of children with epilepsy often experience frustration, hopelessness, and financial difficulties. It is important for parents to address these issues so that they don't transfer their feelings to their child. Support groups and counseling often help dealing with feelings of frustration and hopelessness and restoring daily routines.
  
  
• Overprotective parental behaviour is associated with slower social maturation in children with epilepsy.
  
  
• Parents often confer fewer responsibilities on children with epilepsy than they do on other children.
  
  
• What to do
  • Focus on your child's abilities, not their limitations. This will increase your child's self-esteem, self- confidence, and autonomy.
    
    
  • Offer your child information and explanations about their disorder. In doing so, try to acknowledge your child's feelings and comfort their fears. Fears of dying, losing control, being teased, etc. are common and should be addressed. Sometimes parents feel the need to hold back information for the protection of their child, but this can cause some difficulty in accepting the disorder on the part of the child. Further, children will often fill in the blanks with misinformation, which will leave them feeling more afraid and confused. Being forthright and open is more effective. For example, telling a child that their medication is a vitamin or candy may do more to prevent acceptance of the disorder than to promote it.
    
    
  • Promote independence by trying your best to avoid overprotective behaviour. Try to let your child partake in as many activities as possible, including those they participated in before they were diagnosed with epilepsy. Overprotective parenting can lead to dependency, hypochondria, low self-esteem, and immaturity. It is best for parents to be slightly more cautious, but not to let fear of further seizures run their lives. In trying to achieve independence, children will often experience feelings of pessimism, anger, dismay, unhappiness, and unfairness. Recognizing these feelings and discussing them with your child can help them to overcome the feelings.
    
    
  • Give your child responsibilities appropriate for his or her age.
    
    
  • Allow your child to be responsible for their medication (with supervision at younger ages). Epilepsy is so unpredictable that often people feel like it controls them. Allowing our child to be in charge of his or her medication will promote feelings of control over the unpredictability of their disorder, as well as mastery of their treatment.
    
    
  • Don't make your child keep their disorder secret. Secrets will make your child feel ashamed of their disorder. Whereas, openness about epilepsy encourages acceptance of it.
    
    
  • Encourage your child to ask questions.
    
    
  • Try to treat your child like you did before they were diagnosed with epilepsy.

• Intrafamilial relations are often strained by the onset of seizures. A higher degree of conflict within the family is related to adjustment difficulties in children and higher seizure frequency. Heightened communication within the family and education about the management of epilepsy can improve family relations.

• Levels of social support in individuals with epilepsy have direct effects on mental health and mental well-being. People who feel they have more support are less likely to show symptoms of depression, anxiety or other mental health issues.
  
  It's much easier to accept something when you don't feel like you're alone. That's why the support and understanding of family and friends is so vital. In addition, treating a person with epilepsy the same way as you treat everyone else, and the same way you treated them before they started having seizures, is beneficial to them. By treating them this way, it shows that you've accepted their disorder, and them, and that you're okay with it, that it's not a defining feature of their life or of themselves. Seeing this can go a long way in helping a person with seizures to begin to accept their condition. Thus, the way a person's support system, whether it is family, friends, or peers, reacts to their seizures plays a huge role in how that person adjusts to and accepts their disorder.

• The stigma associated with epilepsy, though somewhat reduced, still exists in our society.
  
  
• Each individual's perception of stigma is strongly influenced by self-perception. That is, it is influenced by how that person perceives themselves as a person living with epilepsy. If they perceive their epilepsy, and themselves, in a negative light, they are more likely to perceive themselves as being stigmatized by society.
  
  
• The degree of stigma a person with epilepsy perceives is related to:
  • Poor seizure control
    
  • Age of onset - Younger people are more likely to feel stigmatized by their condition, than are people who get diagnosed in adulthood
    
  • Neuroticism
    
  • Depression*
    
  • Social support*
    *Low levels of social support and the presence of depression have the biggest impact on perceived stigma.
  
  
• Some individuals with epilepsy cope with their disorder by concealing it so they won't be stigmatized. Hiding epilepsy to avoid stigma is extremely disruptive to normal life, and makes it harder to adjust to the disorder.

• A quarter of people with epilepsy experience problems in relationships with others and 80% report a decline in social activities with the onset of epilepsy.
  
  With a higher likelihood of social isolation and dependency, it can be difficult for some people with epilepsy to maintain healthy relationships. Social growth is most affected when individuals have a more parent-based or dependent living style and lack gainful vocational education. Social integration and social activities need to be actively promoted shortly after onset of seizures to avoid future problems with social isolation.
  
  
• The most common issues affecting relationships in adults with epilepsy are:
  • Personal adjustment to epilepsy
    
  • Sexuality issues
    
  • Education and employment
    
  • Stigma and discrimination
    
  • Independent living
    
  • Transportation
  
  
• Sexual disorders occur in two thirds of people with uncontrolled epilepsy.
  
  Lack of sex drive and sexual dysfunction are problems among epileptics. This is likely due to effects of anti-epileptic drugs. However, when an adult is treated for epilepsy and these problems occur, a strain can be placed on their relationship. Talking about these problems with a physician may yield some solutions or adjustments to medications.

• Children on this diet showed significant improvements in attention and social functioning, however it did not improve parental stress levels.

• People with epilepsy are more likely to be depressed than individuals in the general population.
  
  Research shows that roughly 32% of people with epilepsy have experienced a major depressive episode, and 25% have experienced longer term, but less severe depression.
  
  
• Most people with epilepsy who are depressed are never treated for their depression.
  
  Not all individuals with epilepsy will get depressed, but when they do, it is often ignored. In order to improve the quality of life of people living with epilepsy, it is important for depression to be recognized, diagnosed and properly treated.
  
  
• Depressed individuals with epilepsy, who are not treated, often have more trouble with social interaction, poorer quality of life, and perceive themselves as experiencing more negative life events.
  
  
• Signs or Symptoms of Depression
  
  
  • Emotional and Mental Signs
    • Increased and prolonged Feelings of:
      • Unhappiness
        
      • Loneliness
        
      • Helplessness
        
      • Guilt
        
      • Fear
        
      • Anger
        
      • Rejection
    • Difficulty concentrating
      
    • Continuous negative thoughts
      
    • Loss of interest in previously enjoyed activities
      
    • Low self-esteem
      
    • Thoughts of suicide
    
    
  • Physical Signs
    • Slowed movements
      
    • Low energy
      
    • Listless
      
    • Increased amounts of sleep
      
    • Eating more or less than usual
      
    • Crying easily
  
  
• Contributing Factors and Predictors
  
  
  • Both biological and psychosocial factors are thought to contribute to depression in people with epilepsy.
    
    
  • Biological Factors
    
    
    • Type of seizures - People with generalized seizures are more likely to become depressed.
      
      
    • Frequency and severity of seizures - If seizures are frequent and severe, there is a greater chance of depression
      
      
    • Presence of status epilepticus
      
      
    • Seizures that aren't controlled by medication - People whose seizures aren't controlled by medication have a greater risk of becoming depressed.
      
      
    • Medication - Some anti-epileptic drugs contribute to depressive symptoms (vigabatrin and phenobarbitol), while others are actually used both in the treatment of epilepsy and mood disorders like depression (carbamazepine, valproic acid, and benzodiazepines).
      
      
    • No improvement after having surgery
      
      
    • Seizures that begin in the left temporal lobe - A left temporal lobe focus may contribute to depressive symptoms.
      
      
    • Presence of cognitive auras - People who experience cognitive auras (particularly if there is a left-hemispheric focus) have consistently shown more depressive symptoms and psychosocial difficulties than individuals with other psychic or non-psychic auras.
    
    
    
  • Psychosocial Factors
    
    
    • Social support - Individuals with epilepsy who have large social support networks, supportive open relationships, and who feel as though individuals in their social support system have accepted their disorder, are more likely to accept their seizures and less likely to become depressed.
      
      
    • Not having a legal driver's license - This is a very important factor in predicting depressive symptoms in a person with epilepsy. Loss of independence can promote social isolation and feelings of helplessness and anger, which can result in depression.
      
      
    • Cognitive appraisal of epilepsy - A person's thought about and attitude toward having epilepsy are the most significant factors predicting depression. Negative thoughts and attitudes about their disorder are associated with depressive symptoms.
      
      
    • Stigma - Higher levels of perceived stigma and depression often co-exist.
      
      
    • Fear - Increased epilepsy-related fears, such as fear of dying during a seizure, brain damage, being stigmatized, etc., are associated with more depressive symptoms.
      
      
    • Perception of life events - Research shows that long-term minor depression in people with epilepsy is largely a product of people's attitudes and perceptions of their experiences. If people have a negative attitude toward events that occur in their life, they are more likely to consider those events as adverse and become depressed.
      
      
    • Low self-esteem - Individuals with low self-esteem are more apt to become depressed.
      
      
    • Lack of control of one's condition - When people feel like they have no control over their seizures, and their life, they are more likely to feel helpless and depressed. By educating them about epilepsy and explaining factors that may trigger a seizure, a greater sense of mastery of the disorder can be felt, and these feelings of lack of control can be reduced.
      
      
    • Maladaptive coping patterns - This has been associated with depression, feelings of lack of control and poor psychosocial adjustment.
      
      
    • Social isolation
      
      
    • Unemployment - A history of personal and family depressive illness
  
  
• People who get epilepsy later in life have more difficulties with depression and anxiety related to their seizures than do those who are diagnosed in their childhood.
  
  Past research has shown that a younger age of onset is associated with depression, however new research is finding just the opposite. This is probably because it's harder for adults to adjust to the severe lifestyle adaptations that are required with the onset of epilepsy, including the loss of some independence, and one's driver's license. Kids are often more adaptable, and can adjust more easily to these changes. Often newly-diagnosed adults feel unproductive and question their self-worth. It's very difficult for people to accept a disorder that changes their lifestyle so drastically and is so unpredictable, when they are questioning their own worth and place within their family and community. All of this can lead to depression.
  
  
• What To Do
  
  
  • Encourage the person with epilepsy to share their feelings about their disorder with you, family, or friends.
    
    
  • Have them discuss their feelings with a doctor or counsellor.
    
    
  • Monitor their symptoms and notify a doctor if they get worse.
    
    
  • See the "Adjustment, Coping and Treatment" section for more ideas.

• People with epilepsy are more likely to have difficulties with anxiety.
  
  The fear and anxiety associated with epilepsy can have a negative impact on school or work performance. It can also cause tension and misunderstandings at home.
  
  
• Social anxieties and social isolation occur more often in individuals with epilepsy.
  
  This is due to people's concerns and fear that they may have a seizure in public and may then face the stigma and judgements of others. Social isolation can contribute to low self-esteem, depression, and further anxiety, and thus, these social anxieties should be avoided (or decreased) by educating both the individual with epilepsy and the community about their disorder. Epilepsy education also serves to reduce fears about dying during a seizure, losing control, and the unpredictability of the disorder.

• In a study of individuals with uncontrolled epilepsy, 21% of the participants met the criteria for personality disorders.
  
  
• The most common diagnoses in this study were of dependent or avoidant personality disorders.
  
  
• Individuals who have epilepsy in childhood are more at risk of developing an epilepsy-related personality disorder.
  
  Unlike other psychological problems that arise and then diminish, personality disorders are lasting aspects of the individual that are usually evident by adolescence or early adulthood. Thus, for epilepsy and seizures to be related to the disorder, the seizures have to be impacting the child throughout his or her growth and development.
  
  
• Personality disorder and epileptic auras have been linked, so it may be more likely for a person who has epileptic auras to also develop a personality disorder.
  
  
• What is a Personality Disorder?
  
  
  • Personality disorders are longlasting, ingrained patterns of relating to other people, situations and events. These patterns develop throughout childhood and are very hard to change. They affect every aspect of a person's life.
    
    
  • Avoidant personality disorder
    • This disorder goes beyond the usual feelings of shyness or fear of unfamiliar situations.
      
    • Behaviours include:
      • Intimidation and avoidance of social situations
        
      • Fearfulness of any kind of involvement with others
        
      • Terror at the prospect of being publicly embarrassed
        
      • Worry that others disapprove of them
        
      • Restraint in relationships, guarding against possible criticism, embarrassment, or rejection.
    • Often people with avoidant personality disorder also have difficulties with anxiety and social phobia.
      
    • This disorder may be more prevalent in the epileptic population because of the social isolation and fear associated with the diagnosis of epilepsy. By addressing these issues early, the behaviour patterns associated with avoidant personality disorder may be preventable.
    
    
  • Dependent personality disorder
    • Behaviours include:
      • Clinging to those close to them
        
      • Extreme passivity
        
      • Feelings of inadequacy
        
      • Difficulty making trivial decisions
        
      • Feelings of despondency and abandonment
        
      • Lack of initiation of new activities for fear of making mistakes
        
      • Strong desire to be liked - They'll go to extremes to ensure that others like them, such as agreeing with things even if they don't believe in them.
        
      • React poorly to criticism
    • Over-protection by families or friends, lack of self-esteem, and feelings of helplessness or inadequacy may lead to feelings of dependency, and may instigate the ingrained pattern of behaviours that form this disorder. By giving people with epilepsy responsibilities within their limits, by encouraging them to do things on their own and to have confidence in themselves and their abilities, the maladaptive patterns of personality disorders will likely not develop.
  
  
  
• What to do
  
  
  • If you notice a newly-diagnosed person with epilepsy is having trouble with their diagnosis and is becoming more dependent or avoiding social situations, address those behaviours right away by talking with that person about their feelings and fears. Early detection is important, catching the behaviours before they become ingrained patterns.
    
    
  • If the behaviours become consistent and are affecting the emotional outlook of the person, these concerns should be discussed with a doctor. Remember, just because a person exhibits some of these behaviours, doesn't mean they have a personality disorder. The behaviour patterns have to be longlasting, consistent and pervasive, affecting all aspects of the person's life and causing them emotional stress.

• 7-22% of deaths related to epilepsy are due to suicide.
  
  
• Though this is a scary proposition, it must not be ignored. The negative psychosocial impacts of having epilepsy can be agonizing; however instead of scaring us, these statistics should motivate us to recognize individuals who are struggling with this disorder and need help coping with their pain. Psychosocial issues in epilepsy are real, but are also manageable.

• Adjustment
  
  
  • For everyone at all stages of life, it is hard to adjust to the lifestyle changes associated with the diagnosis of epilepsy.
    
    Each and every person diagnosed with epilepsy experiences some loss, whether it be loss of control, independence, good health or some other feeling of loss. Children feel different from other kids, worry about being teased, and fear going to school. Teenagers and young adults may struggle with not being able to drive a car. Adults may have difficulty managing their seizures at work, disclosing their epilepsy, obtaining health and life insurance and transportation.
    
    
  • It's important to acknowledge and grieve these losses brought on by lifestyle changes to epilepsy.
    
    It is common for individuals with epilepsy to go through the stages of grief while adjusting to their personal losses. These stages include: denial, anger, bargaining, depression, and acceptance. Ignoring these feelings will only make it harder to accept one's condition.
    
    
  • Upon diagnosis, it's normal for patients to feel scared, angry or disbelieving.
    
    Patients are likely to use different coping strategies to deal with their diagnosis. Some will take charge and be active in their own care, while others will feel helpless, fearful, anxious or depressed. Teaching effective coping strategies to newly-diagnosed patients is a good way to ensure that they are able to make a healthy adjustment to their diagnosis.
  
  
  
• Coping
  
  
  • The most effective coping strategies are active, problem-focused strategies.
    
    By taking an active role in their disorder, individuals learn more about epilepsy and feel like they are experts at managing their own disorder, so they feel they have more control over it. This decreases feelings of helplessness and epilepsy-related fears and increases compliance with medical treatment.
    
    
  • Social factors such as self-perception and coping strategies are the most powerful predictors of psychosocial adjustment in people with epilepsy, more powerful than any medical factors.
    
    
  • Using good coping strategies can have positive effects on interpersonal relationships, emotional adjustment, and vocational adjustment in people with epilepsy.
  
  
  
• Treatment for Psychosocial Issues
  
  
  • The most important treatment for psychosocial issues in epilepsy is EDUCATION.
    
    
    • Studies show that education provides patients with:
      
      
      • improved knowledge and understanding of their epilepsy
        
      • increased self-confidence
        
      • feelings of mastery of their disorder (as though they are experts at managing their own illness)
        
      • decreased social isolation
        
      • an inclination to take on responsibilities
        
      • decrease in depression
        
      • decrease in anxiety
      
      
      
    • Successful psycho-educational programs were usually conducted in groups, which allowed individuals to meet other people with the disorder. These programs covered a smattering of topics, often including:
      
      
      • basic knowledge of epilepsy
        
      • living with epilepsy
        
      • diagnosis
        
      • management and treatment of seizures
        
      • self-control
        
      • prognosis
        
      • psychosocial aspects/ variables that affect adjustment
        
      • coping strategies
      
      
      
    • Public education in the community has also been associated with higher quality of life for individuals living with epilepsy.
    
    
    
  • Psychological interventions such as psychotherapy and family therapy are effective supportive therapies. They can help individuals learn coping strategies, increase self-efficacy and resourcefulness, and can improve family dynamics and communication.
    
    
  • Cognitive behavioural therapy may help to reduce seizures, improve social adjustment, and alter unhealthy coping strategies. This treatment will focus on epilepsy-related problems, associated psychological problems, and on development of psychological strategies to reduce seizure occurrence.
    
    
  • Support groups are a good means of ensuring social interaction and promoting discussion about psychosocial issues.
    
    
  • Treatment for children is most effective when it involves some recreational component.
    
    
  • Treatment for individuals living in rural areas:
    
    
    • It can be difficult for people with epilepsy who are experiencing psychosocial problems and who live in rural areas to find help without having to go into a city repeatedly. Studies show that both home- based video counselling and speakerphone counselling were as effective as in-person counselling in the promotion of pro-social behaviour. This means that the mode of delivery of the support is not as important as the support itself and thus it is feasible for people with epilepsy who live in rural areas to get treatment for psychosocial issues without going into the city.

As is clear from this article, the psychosocial impact of epilepsy is widespread and can be debilitating. However, it is also very manageable with the love, support, acceptance, openness, and understanding of family, friends, peers, and the community.

Copyright 2003 Manitoba Epilepsy Association

People with epilepsy should never discontinue anti-epileptic medications or make changes in activities unless specifically advised to do so by an attending physician.

Remember, keep all medicines out of the reach of children, never share your medicines with others and use medication only for the condition prescribed.