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Emotional Effects of Diagnosis - Frequently Asked Questions

mother hugging her child.

This information resource has been prepared for Epilepsy Ireland by Helga O'Mahony, Clinical Psychologist. Helga runs the Child Adolescent & Adult Centre in Limerick, a private practice with particular expertise in the areas of behavioural difficulties and parenting. In the below, Helga outlines responses to the manty questions that have been put to us with regard to the emotional effects of diagnosis. Thank you to Helga for her time and attention in preparing this piece. 

What makes seizures so frightening to live with?

It's undoubtedly their unpredictability. People affected by epilepsy must learn to live with that. Epilepsy is a chronic disorder and may have the same effect as a chronic disease. Epilepsy is however, episodic. No one can predict when a seizure will occur. Therefore, it may be even more difficult to adapt to epilepsy than to other more predictable conditions. Even a child whose epilepsy is well controlled with medication may still be fearful about having another seizure, especially in the presence of peers.

How does epilepsy affect my child’s quality of life?

It is not enough to treat the medical aspects of epilepsy alone. The emotional and physical components of the child's life must all be considered as well. Research shows that parents may interfere with their child's healthy adjustment by being overprotective, rejecting, or having low expectations of him/her. Children with epilepsy can attain a high quality of life. Parents who know when to let children have their own freedom, who accept and support them as they are, and who encourage having new experiences can greatly assist their children in attaining the skills which will help them to have fulfilling lives.

How is the stigma of epilepsy best dealt with?

The social stigma associated with epilepsy can be very damaging to children with epilepsy. Research shows that the attitude of others about epilepsy has more impact than epilepsy itself. Attitudes toward people with an invisible impairment, such as epilepsy, are generally less positive than towards those with a visible impairment.

Children are often self-conscious about their appearance and it may be very difficult for them to deal with having even brief seizures in public. Children fear being viewed as "different". A newly diagnosed child's perceptions of the disorder largely depend on the parents' reactions to it.

How the parents deal with the disorder, rather than the severity or frequency of the child's seizures, determines how well the child adapts to the disorder. Instil confidence in the child by praising what he/she can do. Allow your child to make choices to foster independence.

Do not isolate the child, saying "It's for your own good". All children deserve the same opportunities. All children need to learn how to take reasonable risks. Facing fear and failure is a valuable learning experience necessary for any child to grow and mature.

Should we disclose, or not?

The decision whether or not to tell others about your child's epilepsy depends on many factors. Before you tell anyone outside of the family about the condition, you should discuss it with your child. Ensure that he/she understands why it is necessary to disclose his/her condition. It is probably not necessary to tell everyone, so discuss with your child who you are going to tell. Allow your child to play a role in deciding this. As a general guideline, you should consider informing people of your child's epilepsy once he/she has had more than one seizure. This is especially important when the seizures are frequent and when the child's medication causes side effects. Informing others will allow them to be prepared in the event of a seizure. If the child's friends seem understanding, the decision to tell them may be easier.

However, it is never easy to predict how others will react. While you may be fearful that other people will dwell on the disorder and blow it all out of proportion, it is important for your child's safety that others are informed. Use your own judgement in deciding what to tell others, remembering that openness is preferable. You should also encourage openness to help build your child's self-esteem. Secrecy reinforces the idea that epilepsy may be something shameful. Secrecy interferes with acceptance and can erode a child's feeling of self-worth. A straightforward approach to dealing with epilepsy may appear to be difficult initially but will pay off in the long run.

Self-esteem – How exactly is it affected by epilepsy?

Self-esteem may be the single most important attribute for a child to develop. For children with epilepsy, developing self-esteem can be a challenge, as society often holds negative attitude toward epilepsy.

It is important for adults to focus on what is within their control. Parents can instil feelings of self-acceptance and self-worth within their children. In order to help your child develop self-esteem, you must accept and acknowledge your child's feelings as important, valid and valuable. In doing so, you will create an open environment for discussion, which will help you address any future problems. At times, your child may struggle with a low self-image and increased feelings of anxiety and loss of control due to the unpredictable nature of seizures. Just as parents have a multitude of concerns about their child's seizures, the child may also be coping with a myriad of feelings, including fear, embarrassment, anger, denial and anxiety. These feelings may come and go, and may fluctuate in duration and intensity. Uncertainty about when a seizure will occur, fear of death, fear of medical tests, fear that peers will tease, are feelings that can follow some children into adult years. If parents are comfortable with the child's seizure disorder, it will help the child to be more comfortable with the disorder. If parents are ashamed of or are anxious about their child's epilepsy, then their child will be ashamed or anxious too.

Unfortunately, it is likely that your child will need to combat inaccurate societal beliefs and unfair stereotypes about epilepsy. Learning to cope with these stereotypes may become one of the greatest challenges in your child's life. Often, epilepsy only becomes an illness when seen through the eyes of others. Equipping your child with correct information and the vocabulary to answer questions from the public will be immensely helpful. Sharing information about epilepsy in words that your child understands will help to remove some of the mystery. If there is a greater understanding, it may be easier for your child to accept his/her epilepsy. Concealing information about epilepsy in an attempt to protect a child is not helpful. Children often fill in the blanks with incorrect information, which can create unfounded worries. Don't assume that, because a child asks no questions, epilepsy is not a concern. Your child's self image, in large part, is affected by the reactions of family, friends and involved medical professionals. As a parent, you may be able to educate others. Inform family and friends that the seizures are a temporary interruption to your child's day. It is important for others to understand that your child is a child first, who simply happens to have seizures.

What are the emotional effects of epilepsy on me as a parent?

A single seizure, especially the child's first seizure, usually has its greatest effects on you - not the child. Parents often go through a variety of stages after finding out their child has epilepsy. The first emotion most people experience is fear. Parents fear the unknown most of all, and there is no way of knowing when or if another seizure will occur. Grief is the next emotion that parents often feel. They grieve for the child they think is no longer the same as before, for the effects they think epilepsy will have, and for how epilepsy will interfere with all of their lives. Parents need to put their grief into perspective.

Finding support groups and other resources can help them accept their child's condition. Eventually, grieving must come to an end and you must find a more productive way to deal with epilepsy. Following grief, parents are often angry. They wonder, "Why did my child get epilepsy"? They may feel anger towards the medical staff for not doing/knowing more. Anger is not a productive emotion and instead you should try to discuss your feelings. It is, however, important to realise that these feelings are normal and that they will usually pass with time.

It is crucial to remember that your child is still the same child after a diagnosis of epilepsy. You should treat your child the same and try not to provide too much extra attention. Extra attention can harm one's personality development and can also affect the functioning of the entire family unit, including sibling relationships.

Many people believe that the single biggest issue for parents raising children with epilepsy is overprotection. The effects of overprotection on children can be serious and long lasting. They may include dependency, hypochondria, low self-esteem, underachievement and immaturity. Parents should not let their anxiety about epilepsy control their life or that of their child. Parents should be more cautious but should not let the fear of seizures run their lives.

What are the emotional effects of epilepsy on my child?

Children may go through the same emotional stages as their parents. They may fear dying, fear losing control or fear of the unpredictability of the disorder. Children also grieve, as they may be forced to change what they once could do. Therefore, it is important that when restrictions are put in place, you find other activities that your child can engage in safely. It may be helpful for children with epilepsy to meet other children with epilepsy. Again, for all children, self-esteem is crucial in their accepting themselves as they are.

Parents who tell their child that the child's medication is a vitamin are not allowing the child to begin to accept the disorder. Let children be responsible for taking their own medication, with supervision of the younger child, so that the child feels he/she can take more control. Do not focus on your child's limitations; rather, concentrate on what your child is capable of doing. Children are extremely motivated towards successful adjustment. Having to deal with seizures as part of their everyday development does, however, have the potential to traumatise children. Despite the best efforts of parents and physicians, the child may feel so overwhelmed that emotional development is affected. When trying to cope with the disruption of epilepsy, the child may experience behavioural and emotional difficulties. Even when seizures are controlled, some children still have these difficulties.

Warning signs, especially when there are a few, may indicate that your child is having trouble dealing with epilepsy. These warning signs may include hyperactivity, anger, anxiety, depression, confusion, disorganised speech, inability to listen to and comply with directions, and lack of pleasure.

The behavioural difficulties that children with epilepsy tend to experience are generally a result of the frightening, helpless and traumatic state in which they often find themselves. Seizures are often experienced as attacking and threatening, which in turn heightens the child's feelings of vulnerability. Having to deal with the sudden nature of seizures is often an extremely frightening and tense experience for children. While children with epilepsy may exhibit differences in their physical and neurological development, they must still achieve the same emotional and physical milestones as all other children.

Should I worry about depression in my child?

Depression is quite common in children with epilepsy and should be dealt with by a professional. It may be a side effect of anti-epileptic medication, or it may be caused by other factors including stress, disappointment, or a chemical imbalance in the brain.

Depression can have a major impact on your child's life. It is important for parents to be aware of the possibility that their child may experience depression. This should not be surprising since the diagnosis of epilepsy can be overwhelming. The child who is depressed is unlikely to talk to you about how he/she is feeling.

How should I talk to my child about epilepsy?

As mentioned earlier, it is very important for parents to inform their child about his/her condition. The child may have no knowledge of the seizures if he/she is not conscious during them. How much you tell your child depends on how much you think he/she can handle. Generally, the younger the child is, the more satisfied he/she will be with a brief explanation. However, as the child grows, it is likely that he/she will want more information. Books and information can help explain epilepsy to the child and help answer any questions or concerns. Parents may also want their child to speak to his/her doctor for further information.

You should discuss what epilepsy is; the triggers; what happens during a seizure; how to manage epilepsy in terms of diet, lifestyle medications and medical care; and how your child can tell others about his/her epilepsy. Parents must reassure their child that although some seizures look dramatic, the vast majority is painless for the person involved. They should also consider mentioning that it is extremely rare for anyone to die while having a seizure if they suspect that their child has fears about death.

Children need to be encouraged to ask any questions and mention any concerns they have. Your child should be encouraged to become more involved in managing his/her own epilepsy. This includes taking his/her own medication, researching epilepsy him/herself, becoming aware of his/her own relationships with medical professionals.