Epilepsy Trainer News: Feature – Youth, Epilepsy and Quality of Life

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Information from this article is taken from: Irene M. Elliott, Lucyna Lach, Mary Lou Smith. I just want to be normal: A qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. Epilepsy & Behavior 7 (2005) 664–678. [i]https://www.researchgate.net/profile/Lucyna_Lach/publication/7619919_I_just_want_to_be_normal_A_qualitative_study_exploring_how_children_and_adolescents_view_the_impact_of_intractable_epilepsy_on_their_quality_of_life/links/54873c400cf2ef34478ec5bc.pdf

What is it like for young people living with epilepsy?

Children and adolescents with epilepsy are at increased risk for poor health-related quality of life (QOL) even if seizures are controlled with medication. They are also at increased risk for mental health and social issues. The above mentioned study draws from interview with fifty-one children and adolescents (7–18 years old) and is improve our understanding of how children and adolescents with poorly controlled epilepsy perceive the impact of epilepsy on their QOL using a qualitative approach.

This 2005 study interviewed and explored how children and adolescents with poorly controlled seizures experience the impact of epilepsy on their quality of life (QOL) looking at physical, emotional, behavioural, social, and cognitive/academic function. Findings revealed much about the intrusive role of seizures on all aspects of young persons lives.

Adolescents (and children) with epilepsy ranked hatred of epilepsy, social embarrassment (including teasing, bullying), fear of seizures, and injuries as some of their most significant concerns. Below is a summary of some of the unwanted effects and impact of epilepsy on this age group.

Physical effects

Few studies looked at the physical effects of seizures in relation to quality of life.

Commonly reported physical effects included: excessive fatigue, sleep, and lack of energy and motivation as barriers to normal academic and social pursuits.  Seventy six percent of youths in this study reported excessive fatigue as their main physical complaint.


Youth revealed how intermittent or continuous fatigue made it difficult for them to think clearly and be available to participate in study or school work. Mostly children and adolescents experienced continuous fatigue that was worsened by seizures. For some, excessive tiredness was felt only around the time of a seizure and was short lived so they were then able to quickly return to normal classroom activities.  For others, the fatigue was persistent and need for sleep that accompanied their seizures could last hours or a whole day. This meant they either missed going to school or were unable to remain at school. Both scenarios made it difficult for youths to fully participate in classroom learning.

Many reported needing more hours of sleep than usual. Extended naps during the day and earlier bedtimes further reinforced how, physically, these youths were different from their siblings or peers.

Although less frequently mentioned, other physical complaints attributed to seizures or effects of antiepileptic drugs included headaches, hair loss, a sore mouth from seizures, visual disturbances, clumsiness, increased appetite, weight gain, and dizziness.

Emotional effects


Many youths with epilepsy reported heightened emotions. Although 63% of them identified feeling ‘‘happy’’ some of the time, the majority also had periods of intense emotional distress that they attributed largely to the unpredictability of their seizures and loss of control over their bodies. Narratives were punctuated with words that powerfully identified their suffering: ‘‘worry,’’ ‘‘fear,’’ ‘‘anger,’’ ‘‘pain,’’ ‘‘sadness,’’ ‘‘depression,’’ ‘‘trauma,’’ ‘‘frustration,’’ and ‘‘embarrassment.’’ Worry or fear (associated with the unpredictability of seizures) (49%), sadness, general dissatisfaction with life or depression (45%), and anger and frustration (67%) were often connected to and, therefore, considered as originating from the experience of having seizures, medication side effects, or the extent of parental monitoring.

Unpredictability of seizures

Emotions surrounding the unpredictability of seizures and loss of control reflect the worry about ‘‘what if’’ a seizure happens – and this concern overshadowed their lives. The apprehension and worry about injury, or even death that surrounded an anticipated seizure were apparent.

The unpredictable nature of seizures may contribute to the development of a more general sense of helplessness and loss of control. In an effort to avoid potential embarrassment and stigma, youths may socially withdraw from their peers, isolating themselves and limiting their social interaction


The embarrassment and stigma associated with having a seizure and the uncertainty of when and where the next seizure might occur made it uncomfortable for some youths to be around their peers and heightened anxiety.


Various degrees of sadness or general dissatisfaction with life were experienced as fluctuating from hour to hour or day to day. It was sometimes difficult to distinguish differences between sadness and depression and pain. In other instances, youths revealed more disturbed emotions that included thoughts of suicide.

Children and adolescents expressed feelings of frustration and anger which they often attributed to their seizures, medications, or their perception of excessive parental monitoring.

Social effects

Social Isolation

A dominant theme in this topic was social isolation. Youth’s sense of social isolation arose from

  1. internal constraints (lack of self-confidence, feeling alien or different), and
  2. external constraints (exclusionary behaviour by peers and perceived excessive parental monitoring and limit setting).

Even youths who had relatively close friendships sometimes experienced a sense of profound separateness and isolation. The most frequently (65%) cited exclusionary behaviour experienced by the surveyed youth was that of being labelled, teased, and/or bullied by peers.

But not all experiences were negative. Some youths reflected their resilience by taking positive action in response to teasing by peers. These youths refused to succumb to ill-treatment from their peers and took it on themselves to take control and find a solution such as educating their peers or having their teacher speak to them.

Parental restrictions

Approximately 80% of youths expressed an opinion that parents were excessively worried about them because of their seizures. They described parental vigilance and monitoring that occurred during the daytime and during sleep at night. Youths often felt frustrated by the restrictions that reduced their independence and opportunities to engage fully in age-appropriate social and recreational activities.

Cognitive and academic effects

Problems with memory were a common theme amongst (children and) youth with epilepsy with the majority (70%) reporting problems with memory and/or other aspects of learning. The most striking theme in the cognitive area was that of youth not feeling they were physically or mentally available to learn and, therefore, unable to count on a continuous and integrated learning experience.

The problems with fatigue decreased the quality and quantity of participation in the classroom and in addition to fatigue, problems with memory compromised their performance at school and had an impact on their sense of self-worth. Seizures and post-ictal periods played a role in memory and attention difficulties.

Figure 1   Theoretical model of health related quality of life in youth with epilepsy. [1]

PropL w Sz = proportion of life with seizures

Ref: https://s3.amazonaws.com/academia.edu.documents/45166552/Health-related_quality_of_life_in_youth_20160428-5448-1pzkqax.pdf?AWSAccessKeyId=AKIAIWOWYYGZ2Y53UL3A&Expires=1507090728&Signature=Oa2ClmDRgU472ZkAW4R%2B4ScZOPY%3D&response-content-disposition=inline%3B%20filename%3DHealth-related_quality_of_life_in_youth.pdf

Some of the most frequent mental health issues seen in people with epilepsy, including youth, are depression and anxiety.

Depression and Anxiety [ii],[iii], [iv]

Anxiety and depression are very common in people with epilepsy. Depression is about 2-3 times more common in people with epilepsy – in the mild to moderate range. Up to 40 percent of youth with epilepsy develop anxiety disorders. Simplistically, the brain activity associated with seizures can lead to depressive moods, and also the stress of living with a chronic condition or medication effects, can worsen feelings of depression and anxiety.

As a consequence, epilepsy may be more difficult to manage as depression is sometimes known to make seizures more frequent and can take away the motivation to manage epilepsy effectively.

The treatment of anxiety disorders is very similar to the treatment for depression.

There is a definite link between epilepsy, depression and anxiety disorders. Some of the facts are:

  • Depression may be present before the diagnosis of epilepsy
  • People with a history of depression are 4-6 times more likely to develop epilepsy because the genetic or biological factors that cause both epilepsy and depression sometimes show before the first seizure
  • Symptoms of depression may be directly caused by seizures which may have little or no physical symptoms, but can lead to unexplained feelings of sadness, guilt or an inability to take pleasure in any activity
  • Depression or anxiety may develop soon after diagnosis
  • Depression or an anxiety disorder may happen as a consequence of living with epilepsy.

Symptoms of depression in teens with epilepsy

Depression in this age group should be taken seriously. Youth suicide is the third most common cause of death in this age group.

It can be hard to distinguish adolescent turmoil from depressive illness, especially as the young person is also forging new roles within the family and struggling with independence, and academic and career decisions.

An adolescent who is depressed may not show obvious signs of depression. Instead, they may start to behave uncharacteristically, for example by:

  • becoming socially withdrawn
  • falling in their performance at school
  • engaging in risk-taking behaviour (for example reckless driving, inappropriate sexual involvements)
  • engaging in drug and alcohol abuse

Sometimes a minor physical problem is used as a disguised appeal for help.

Other symptoms of depression can include; sleep difficulties, low energy, guilt, irritability, anger, isolation from social activities and hobbies, hopelessness, and helplessness.

Symptoms of anxiety in teens with epilepsy

In young people, anxiety might look different than it does in adults; they might seem more argumentative, irritable or aggressive at times, perhaps having angry outbursts or destroying property.

There are many different types of anxiety disorders, including generalised anxiety, social anxiety, separation anxiety, obsessive-compulsive symptoms, phobias, and panic. Some common symptoms of anxiety include:

  • Feeling nervous or “on edge”
  • Unfounded or unrealistic fears
  • Trouble separating from parents
  • Sleep disturbance
  • Obsessive thoughts and/or compulsive behaviours
  • Trembling, sweating, shortness of breath, stomach aches, headaches, and/or muscle tension or other physical symptoms

Often, the child or adolescent feels these symptoms are beyond his/her control, which only adds to their concerns.

Sometimes parents feel their child is misbehaving and they ignore important warning signs.


Epilepsy can bring about many difficult challenges across the lifespan. It is not just about seizures. The nature of epilepsy and the fact that it is a disease that affects the brain can certainly have an impact on behaviour, thoughts, emotions and social skills. The fact that epilepsy is unpredictable and ongoing usually means the impact is heightened and spreads to all members of the family.

Children and adolescents with epilepsy are at increased risk for poor health and social related quality of life (even in the absence of active seizures). They are also at increased risk for mental health issues. Family, school and community support and acceptance can significantly influence how much these issues impact each child or adolescent.

Doctors and other involved health professionals not only need to aim to improve seizure control, but they also need to focus on optimal quality of life by also considering the different features and effects of the epilepsy, other conditions and psychosocial factors.

Most people are not aware of these difficulties, particularly as you can’t see that a person has epilepsy. Increasing awareness about epilepsy in the wider community can help reduce the difficulties for those living with epilepsy.

[1] L. M. Lach, G. M. Ronen, P. L. Rosenbaum, C. Cunningham, M. H. Boyle, S. Bowman & D. L. Streiner. 2006. Health-related quality of life in youth with epilepsy: Theoretical model for clinicians and researchers. Part I: The role of epilepsy and co-morbidity. Quality of Life Research 15:1161-1171

[i] https://www.researchgate.net/profile/Lucyna_Lach/publication/7619919_I_just_want_to_be_normal_A_qualitative_study_exploring_how_children_and_adolescents_view_the_impact_of_intractable_epilepsy_on_their_quality_of_life/links/54873c400cf2ef34478ec5bc.pdf

[ii] https://www.epilepsy.org.au/e-quip-an-epilepsy-resource-for-youth/

[iii] http://resources.beyondblue.org.au/prism/file?token=BL/0835

[iv] https://my.clevelandclinic.org/-/scassets/files/org/neurological/epilepsy/pediatric-epilepsy-and-anxiety-fact-sheet.ashx?la=en