FACT: People often have misconceptions about the causes, consequences and treatments of epilepsy. Fear leads people with epilepsy to modify their activities and the jobs they pursue, and may undermine their self-confidence and self-esteem, even if they have been seizure-free for 1 year. These psychosocial effects become further magnified in people with recurrent and/or frequent seizures.
Studies have shown that people with epilepsy are at a greater risk of psychopathology and more likely to be socially dysfunctional than people without epilepsy. There are 3 main variables thought to contribute to the development of psychopathology in epilepsy:
- Clinical factors related to natural history of epilepsy (age of onset, duration of epilepsy)
- Medication factors (AEDs)
- Psychosocial factors (perceived stigma, social support)
Seizure disorders are often associated with a variety of psychological and social difficulties. Psychosocial problems may be more disabling than the seizures themselves. It has been demonstrated that people with epilepsy are more strongly influenced by their self-perceptions of the stigma associated with epilepsy, not by the objective facts of their epilepsy.
Another psychological effect of the stigma of epilepsy is that people with it often restrict their activities to the home for fear of having a seizure in public. Participation in social and in employment activities relates more closely to perceptions of the disability than to seizure frequency and other more objective measures of epilepsy.
Anxiety and depression are the most common forms of psychiatric morbidity in people with epilepsy and they often coexist. A recent study of people with epilepsy indicated that many harbored fears of death and brain damage as a result of their seizures. It is thought that these fears may be a leading cause of psychosocial impairment in people with epilepsy.
To avoid these psychosocial effects, people must deal with all of the various psychological and sociological factors which accompany a diagnosis of epilepsy in order to make a positive adjustment to epilepsy (motivation to carry out a medication regimen, adapting well).
FACT: Epilepsy is not only a medical diagnosis but also a social label and people with epilepsy are the objects of social stigmas.
The physical, social and economic burdens of prolonged drug treatment, and the psychological problems associated with chronic illness may have an important impact on day-to-day life. Adjustment to epilepsy has always been considered to be multi-faceted in nature, involving biological, social, and psychological factors. Researchers have found that people with epilepsy utilize coping strategies to deal with their condition and that these play an integral part in adjustment.
A significant proportion of people with epilepsy have misperceptions of epilepsy. They act on these misperceptions which results in greater psychosocial disability and increased behavioural and emotional problems. Keep in mind though, that not all people with epilepsy experience such emotional problems and the psychological adjustment to such difficulties varies from individual to individual.
Anticonvulsant medication can have a range of negative side effects, which diminish the general functioning of the person with epilepsy who is taking them. This can result in decreased functional capabilities and a loss of self esteem. Studies have confirmed that there is a correlation between self esteem and the dosage of anticonvulsant medication a person takes. Some anti-convulsant medications can predispose some people to psychosocial problems. A major contemporary trend in epilepsy treatment is to use monotherapy (treatment with only one drug) whenever possible, particularly with modern first-line anti-convulsant medications, instead of polytherapy (treatment with multiple drugs). Monotherapy has been shown to improve cognitive function. Thus, modern treatment which emphasizes monotherapy and the use of medications known to have the fewest behavioural and cognitive side effects is crucial to help prevent the psychosocial difficulties which can result from the use of AEDs.
People have varying perspectives of the ‘severity’ of their seizures and seizure disorders. This subjective perception of the symptoms of epilepsy has been found to bear a stronger relationship to measures of psychological and social adjustment than actual seizure frequency or seizure type. Many people express considerable misunderstanding of their seizures and the causes and consequences of their seizures.
Studies have found that depression and anxiety are often poorly recognized in paediatric patients with epilepsy. This is because in paediatric patients, these conditions may be presented differently than in adults and may be manifested as disruptive behaviours or irritability. Health care providers should make a special effort to inquire directly about depression or anxiety-related conditions in children. These conditions must be treated so that the child is able to develop fully, both physically and emotionally.
Depression is a deep intense feeling that never seems to lift. The most persistent mood experienced is sadness but anxiety and irritability may also be present. Decision-making becomes an endeavor in itself.
Some of the first signs that one may be suffering from depression include:
- Lack of attention to ones’s appearance
- Loss of motivation, drive and ambition
- Normal activities become burdensome
- Difficulty with social interaction: preference for solitude
- Sleep disturbances (early morning awakening, insomnia)
- Loss of appetite; food loses its flavour
- Loss of energy
- Feelings of fatigue.
Depression can result from psychological reactions such as fear (of having a seizure) or result from the side effects of certain medications. The acceptance of a diagnosis of having epilepsy often involves grief reactions such as denial, anger and depression, and can affect self-esteem and confidence. Depression affects the whole person: body, feelings, thoughts and behaviours. Depression can interfere with a person’s ability to work and interact with people, including family.
Depression occurs in approximately 20% of people with epilepsy. Also, suicide rates among people with epilepsy are 5 times higher than the average, so people with epilepsy must be aware of depression and its warning signs.
If you are experiencing any combination of the symptoms mentioned above for 2-3 weeks with no change, you should consult your doctor.
Depression IS treatable! If you are feeling depressed or suicidal GET HELP IMMEDIATELY. Help is available and it is smart to use it. Check the front of your local phone directory for the Distress Centre nearest you. In Toronto call, 416-598-1121 or 416-486-1456.
Self-esteem is the positive or negative attitude toward the self. Epilepsy has been shown to have a negative effect on self esteem, especially among those with epilepsy from lower socio-economic groups, the unemployed and those who are divorced, separated or single. This is thought to occur because those with epilepsy often internalize the negative societal stigma of epilepsy, which then negatively affects their self-image. A range of negative personality characteristics have been correlated with low self esteem including lack of confidence, lack of creativity, lack of independence and defensiveness. Therefore, low self-esteem can be a significant problem for people with epilepsy. Quality of medical care, employment and social background play an important role in protecting people from a decline in self esteem.
Tips for Developing Self Esteem
- Reward yourself.
- Take responsibility for your actions.
- Take time to relax. (Stress is a big trigger for seizures, and also tends to reduce self esteem: when we’re stressed out, we don’t usually feel good about ourselves.)
- Learn how to deal with anger in a healthy way. (Learn how to problem solve, scream into a pillow, exercise.)
- Learn how to deal with criticism.
Self Esteem in Children
It is very important for children to have self esteem. Self esteem develops in the first 3 years of life. For children especially, it is often difficult to cope with the unpredictability and irregularity of their seizure disorder, which can lead to problems involving self esteem. They often have feelings of embarrassment, guilt and rejection which can make play, school, and family life awkward and discouraging. The important components of a child’s relationships include affection, inclusion and control. These are important psychosocial needs throughout our life-span and must be nurtured early in a person’s life in order to develop a self-loving and confident personality. Affection is important to the child with epilepsy. All children need and respond to hugging, touching and smiling. Receiving and responding to touching makes the child feel lovable and capable. The child also needs a sense of inclusion in the various social aspects of play, school and family life.
Tips for Developing Self Esteem in Children
- Discuss your child’s seizure disorder in an open and positive way.
- Acknowledge your child’s own special interests and talents.
- Build on your child’s strengths.
- Include your child in decision making.
- Encourage your child to speak directly with doctors.
- Be aware of your child’s social life.
- Let your child know you enjoy spending time together.
- Remember: you are your child’s most important role model.
There are 2 types of stress: good stress and bad stress. Good stress can give us reason to get up in the morning (going on a first date, graduating, getting married, moving, going on a holiday). Bad stress may come from negative pressure and negative changes in our lives. Too many good stresses at one time can become bad stress.
Stress can lower a person’s seizure threshold (make the person more likely to experience a seizure) or can itself trigger a seizure (not only lower the seizure threshold but may actually induce the seizure). Although not all bad stress can be eliminated, everyone needs to learn how to cope with stress. This requires an invest of time and energy in solving the problems which are at the root of the bad stress.
Tips for Coping with Stress
- The first step in solving a problem is recognizing that it exists.
- If you are stressed because of too many changes in your life, then slow down and pace yourself.
- If you feel that you can’t slow down, you may need to develop more assertiveness. Learn to say “NO”. Ask others for what you need.
- Bring about positive changes. Actively change what you are unhappy about but set realistic, achievable goals. Otherwise you may experience more failure, disappointment and ultimately more stress.
- Relax! Give your mind and body a break: read, exercise, write, listen to music, meditate, paint, do yoga. Relax alone, with a friend or as a member of a club. Seek out professional help if you experience prolonged, severe and/or unmanageable stress.
- Get enough sleep.
- Join clubs.
FACT: People with epilepsy often state that they believe that they would be discriminated against if others earned of their epilepsy (felt stigma) before any actual instances of discriminatory behaviour (enacted stigma) actually occurred.