Epigraph Vol. 20 Issue 2, Fall 2018
Overcoming the stigma of epilepsy in Asia
The indirect costs of epilepsy—unemployment and underemployment, premature death, and lost work time by people with epilepsy and their caregivers—are usually estimated at two to three times higher than the direct medical costs of the condition.
The social costs of the condition are multifold. In Asia, people with epilepsy are less likely to marry, get a college education and be employed, noted Chong Tin Tan, University of Malaya, Kuala Lumpur. Tan gave the 2018 Seino Memorial Lecture at ILAE’s Asian & Oceanian Epilepsy Congress, held June 26-30 in Bali.
These factors are intertwined, he noted, since more education increases the chances for employment and higher income, which increases the chances for marriage.
Several clinical factors are linked with unemployment:
- Early age of seizure onset (< 20 years of age)
- Higher score on seizure severity scale
- Less responsiveness to first anti-epilepsy drug
- Lack of seizure freedom
- Increased seizure frequency
But seizure freedom does not predict employment, said Tan; nor do uncontrolled seizures keep people from working. Data from a 2013 study showed that 70% of people with epilepsy were employed full time, though half had uncontrolled seizures. Another 10% were employed part time. Of the 20% who were unemployed, one-fourth were seizure free.
Research has elucidated several factors that increase the employability of people with epilepsy:
- Advanced education (beyond high school)
- Ability to drive
- Ability to travel independently
- Ability to cope with stress at work
- Higher self-esteem
People with uncontrolled seizures are not inherently unemployable, Tan noted. A 2015 survey found that most people with uncontrolled seizures said they could maintain employment if given a short time to recover after each seizure.
Employer support and support from coworkers also were cited as important. What was considered “support” depended upon the individual. In one case, a person with epilepsy noted that her employer was supportive because the employer did not disclose her condition to others. She felt that keeping this information from her coworkers helped her to avoid discrimination. In another case, an employee with epilepsy said that his coworkers were supportive because they were aware that he had epilepsy; if he had a seizure, they understood and knew what to do.
A 2016 study found that 64% of people with epilepsy were employed while managing an average of 15 seizures per year. Self-motivation was a key predictor of employability. Yet this quality is rarely studied in epilepsy research, Tan said.
He noted that self-motivation, or self-determined motivation, comes from internal forces:
- Working to meet a goal (such as owning one’s own business)
- Working for self-satisfaction (enjoying the work, being personally fulfilled, helping others)
A key way to enhance self-motivation in people with epilepsy, said Tan, is to allow them to live their own lives and not be overprotective. In the 2016 study, lower levels of family overprotection were correlated with higher employability.
Tan reviewed the case of a girl who left school at 13 due to seizures. She was diagnosed with focal epilepsy of unknown cause, which was precipitated by stress. After treatment began and she was having only an occasional seizure, her parents would not allow her to return to school; they were worried that the stress of school would cause seizures. The father often came to the daughter’s follow-up appointments without her; he left her at home, citing the stress of travel.
The girl would write long letters in which she said that the biggest stress in her life was actually her low self-esteem, which was presumably partly due to a lack of independence. Yet even by age 24, when she had stopped having seizures altogether, her parents would not allow her to take classes, socialize or get a job. She was bored, lonely and saw no meaningful future.
Tan encouraged parents to allow their children with epilepsy to attend school, play sports, take up hobbies, go to college, live independently and find meaningful work. His suggestions:
- Help your child to accept her illness and herself
- Do not show self-pity and shame, or reinforce them in your child
- As much as possible, encourage independence at school, social activities, hobbies and work
- Do not allow the child to use epilepsy as an excuse to shirk responsibility
- Do not spoil the child because you feel guilty or sad that they have epilepsy
Tan also discussed stigma and culture in Asia, noting that according to several surveys done between 1995 and 2002, many Asians would not allow their children to play with a child who had epilepsy. In some languages—such as Chinese, Korean, and Japanese—the term for “epilepsy” is related to madness, and sometimes also to animals (see box). The name reflects misconceptions in these countries and heightens the stigma.
In Chinese culture, the stigma of having epilepsy can extend to the family. People with epilepsy may not be allowed to work or attend school, and an epilepsy diagnosis was historically kept secret. Tan suggested that dialogue and re-interpretation of Confucianism—the basis of culture in about half the Asian population—could be used to reduce stigma and bolster self-esteem in people with epilepsy.
He said that whereas shame is the basis of morality in Confucianism, the teachings also include the concept of not feeling shameful. Confucius says the true gentleman is free in being “able to resist feeling shameful when there is no reason to be so.” From this perspective, people (and their families) should not feel ashamed of having epilepsy.
Chinese culture and values attach high importance to being able to exert vitality in the presence of adversity and to holding to one’s values under difficult circumstances. Many Chinese cultural symbols reflect this, such as plum (flowers in winter), bamboo (bends, but does not break) and lotus (grows and flowers out of mud, yet is not stained). Not feeling shameful is an expression of such strength and vitality, said Tan. Traditional Chinese philosophy takes a positive attitude toward pain, hardship and adversity with the belief that these experiences help to mold and toughen one’s character. Thus, he concluded, allowing freedom and nurturing independence, strength and character in children with epilepsy is consistent with the traditional attitude to upbringing.
Since 2008, the biennial Seino lecture has honored Masakazu Seino (1930-2007), an epileptologist from Japan who was instrumental in establishing the Asian & Oceanian Regional Commission of ILAE (now called ILAE-Asia & Oceania).
Subscribe to the ILAE Newsletter
To subscribe, please click on the button below.
Please send me information about ILAE activities and other
information of interest to the epilepsy community