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Children
Telling other family members
Telling teachers
Adolescents and young adults
Adults
Informing financial institutions
Once a diagnosis of epilepsy is confirmed, the process of living with the condition begins. One important aspect to be considered is who should be told about the diagnosis. This obviously differs depending on age, so here we will look in general terms at who should be told in relation to children, adolescents/young adults and adults.
Children
Telling people is an issue that concerns most parents of children with epilepsy. Unfortunately many have fears about whether their child will be treated any differently once the condition is disclosed. Some even worry that their child will be rejected. As a result, a number of parents may choose not to talk about the condition outside of the immediate family. A minority may even choose not to explain the condition to the affected child.
Although there is a chance that you may come across people with negative attitudes towards epilepsy, it is widely accepted that being open and honest is the best approach.
Children should be told about their epilepsy, although the amount and type of information you give them will depend on their age. It is extremely important to be open with your child.
Small children have vivid imaginations and if what is happening is not explained to them, they may conjure up ideas and fantasies that are more frightening than epilepsy ever could be. The child needs to be reassured about tests they may have had to undergo.
Older children and teenagers meanwhile will need to know exactly what is happening and why they need to take medication. This is especially important because they will eventually have to learn to take responsibility for their own medication. Non-compliance, i.e. not taking medicine properly, is one of the main reasons for seizures recurring.
Telling other family members
Other children in the family will also need to be told about the epilepsy, but again the amount and type of information should depend on their age. This is particularly important if they have seen their brother or sister having a seizure.
Other family members, such as grandparents, aunts and uncles will also need the situation explained to them as a seizure could occur when the child is visiting them. These relatives can also be a source of great support.
Telling teachers
It is important that anyone who is in the care of your child is told about their epilepsy, therefore their teacher should be told. This is particularly relevant if the child is likely to have a seizure in school. However, even if this is unlikely, the teacher should still be told that the child is on medication and why.
If your child is likely to have a seizure in school, it is important for the teacher to know what is likely to happen. The teacher will need to know how long the seizure will last and what they can do to help. They will also need to know what happens after the seizure, i.e. will the child need sleep and therefore have to be sent home or can they stay on in school.
Some children may wet themselves when having a seizure. If this is likely to happen, you will need to arrange for a change of clothes to be kept at the school.
Adolescents and young adults
A similar approach to the one taken with children is appropriate. Other family members should be told, as should teachers. As secondary school students tend to have different teachers for different subjects, this may involve letting a lot of people at the school know.
If the young person is sitting an examination, such as the Leaving Certificate, the invigilator may also need to be informed. In Ireland, provision for State examinations includes ‘special consideration’ facilities for students with disabilities. As epilepsy is considered a physical disability, special consideration can be applied for by completing an application from the school. This should be done well in advance of the exam.
If a student has a seizure during the exam, this special consideration provision will apply and it will be taken into account. If no seizure occurs, the provision is not invoked (except for the fact that a separate room may be required).
If the young person is going to college, they should enrol immediately with the college doctor, who should be given all the relevant information by their family doctor.
Staff members with whom the young person has regular contact, such as lecturers and tutors, should also be told about the condition. Exam provisions vary from one institution to another, therefore the person should contact the college’s disability officer to find out what supports are on offer.
If the person has gone away to college and is sharing accommodation, the people they live with should be told what might happen and what to do if a seizure does occur.
Adults
Many people with epilepsy wonder how they should deal with disclosing their condition in a work situation. Some may choose to disclose this information on the application form, either by ticking the box marked epilepsy in the medical section or by including an explanatory note or letter from their doctor explaining the situation.
On the plus side, a person may experience peace of mind because the prospective employer knows about the epilepsy from the outset. However, there is potential for discrimination and a person may not even be called for an interview if an employer has misconceptions or a lack of knowledge about the condition.
On the other hand, a person may choose to disclose their condition during an interview for the job. This may give a person the chance to stress their abilities face-to-face with their prospective employer and answer any questions from the employer. However for some people, the prospect of having to declare their epilepsy during an interview may prove stressful and adversely affect their performance.
Of course a person may wait until they have been offered the job before disclosing their condition. However, this could lead to feelings of mistrust, whereby the employer feels you were not honest with them from the beginning. If the employer has little or no knowledge of the condition, this could further promote the idea that epilepsy is something that must be hidden.
Finally a person may choose to wait until they are actually working in the job before telling anyone about their condition, particularly if they fear discrimination. This may work in their favour as they may have already proven they are capable of the job. However again this could lead to feelings of mistrust.
Remember as the law currently stands in Ireland, a person with epilepsy is only obliged to disclose their condition if they are specifically asked. However if they are specifically asked and do not disclose this information, their employment may be terminated.
Informing financial institutions
Unfortunately a significant number of people with epilepsy experience difficulty obtaining financial products, such as pensions, mortgages, life assurance and income protection. It is not unusual to receive high quotes, or to be refused cover altogether.
Factors which should be taken into account by your financial institution, include degree of seizure control, type of epilepsy and treatment.
Always shop around for quotes. If the quote appears too high, you can question this. If difficulties persist, you should consider contacting bodies such as the Irish Pensions Board and the Irish Insurance Federation for advice on your own specific situation.
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