Issues for the teen with epilepsyFrancine Adelson, MSW
Adolescence is a time of many changes, both physical and emotional. It is a transition between childhood and adulthood. It is a time of uncertainty; this is necessary for growth to occur. The crucial issues at this stage of life are independence, identity, and conformity.
From the parent's point of view, it is a time to launch children into an adult world. In order to accomplish this goal, parents need to be flexible and provide their teens with opportunities for growth. A major task for teens is to establish independence. How is it accomplished? One step that is important to teens is learning how to drive a car. Another step towards independence involves improving their ability to make important decisions for themselves. A third issue building self-esteem, which affects their relationships with the peer group, particularly the opposite sex. Lastly, but also important, is finding a job.
All of these issues are difficult enough for teens who are not faced with a disability. Imagine how hard it must be for teens with epilepsy! Firstly, unless they are seizure-free for a period of time, teens with epilepsy may not be eligible for a drivers licence. This difference separates them from their peers at a time when conformity is very important. Driving is seen as a rite of passage into adulthood and independence, while significant to young women, seems to be a more important issue to young men. As one young man reported, "It's embarrassing to have to be driven around by my girlfriend."
In the process of growing up, teens need to learn how to make decisions and take some control over their lives. Many teens complain that they have been overprotected and haven't had enough practice in these areas. Some teens with epilepsy may try to control their lives by taking (or not taking) control of their medication. Among this group, the most vunerable teens seem to be those with reasonably effective seizure control. They may decide to discontinue their medication on their own. We often see these teens in hospital, after they have had recurrence of seizures.
Teens with epilepsy may face restrictions on participating in certain sports. Again, they may feel different because of this restriction.
When looking for a job and developing relationships with the opposite sex, disclosure is an issue. Teens often wonder if talking about their epilepsy on their first date will scare the person away. They worry that the person will lose trust in them if they wait too long to disclose their condition.
"epilepsy is not who you are, but it is a part of you."
Disclosure, whether to a friend or employer, has benefits and risks. Teens who decide not to disclose this information may worry about having a seizure at work or on a date. Teens who decide to disclose their epilepsy may be more at ease, knowing that those around them are prepared.
Epilepsy is particularly hard to deal with because of the unpredictability of seizures, loss of bodily control, embarrassment, and stigma of the disease. While all of these issues may give the teen cause for concern, there are ways to deal with them effectively. It is important for teens to understand their condition, as there are many types of epilepsy. It is helpful to focus on what they are able to do, as these activities can reinforce their bonds with peers. Teens also need to educate their friends to see epilepsy as a condition like many others and to not be afraid of it. They may need some help in reassuring the parents that they are able to make some important decisions for themselves. The most important thing is for teens to accept their weaknesses as well as their strengths.
Many publications deal with the psychological aspects of epilepsy. There is general agreement that the teen with epilepsy must cope with a heavy load at a period of life that is stressful, at the best of times.
However, a repetitive theme emerges when older people with epilepsy look back on the challenges that they faced as teens. Many say that it was not the epilepsy itself that proved to be the biggest obstacle but rather how their families and friends dealt with it.
It is important for teens with epilepsy to achieve a balance. If, for example, teens are overprotected and haven't had the opporitunity to experience new situations, they may suffer from low self-esteem. Their ability to grow may be hampered by a parent who perceives that this disability is different from others because of the unpredictability of seizures and risk of injury.
It is important for teens to realize that epilepsy is not who they are, but it is a part of them. As Epilepsy Action advises, "It's up to you to work out ways to live your life to the fullest without either ignoring the fact that you have epilepsy or letting it interfere too much. This can take courage, determination, imagination – and time. Greet your achievements with enthusiasm and treat setbacks as experiences from which you can learn, grow, and find the strength to deal with the next challenge. None of us are powerless. In our own small way, we can all control what happens, expand our horizons, and stand up for what we believe. Now it's over to you. Remember: it's your body and your life – choose how you live it!"1
Francine Adelson, MSW, social worker, epilepsy program, Montreal Neurological hospital, McGill University Health Centre, Montreal, QC
Reference:
1. Epilepsy Action (British Epilepsy Society). Epilepsy and self-management. 2002. Online at:
http://www.epilepsy.org.uk/info/slfmnfrm.html
