Living with Epilepsy
Do not think of yourself as ill or an invalid. Most people with epilepsy are in good physical health between seizures. Aim to keep yourself physically and mentally active. ‘Nothing in excess’ is good advice for most people with epilepsy. A regular balanced diet and adequate sleep are important.
Seizures
The unpredictability of seizures tends to make epilepsy difficult to live with. However some people learn to recognise the feeling that a seizure may be about to happen and they are able to make plans accordingly.
Prodromes
Some men and women experience ‘prodromal’ symptoms – a feeling of mounting tension and anxiety for hours or even days before the seizure.
Auras
Other people have ‘auras’ or brief warnings which may consist of odd smells or tastes, flash–backs, tingling sensations, a rising feeling in the stomach or visual distortion. The aura is actually the early part of the seizure already in progress and a more dramatic or intense stage often follows. Not everyone with epilepsy will have these warnings.
Other People
It is important that epilepsy should be kept in perspective, and not allowed to loom too large. If epilepsy dominates an adult’s life and conversation, other people will rapidly become bored. It is wise if the adult with epilepsy plans a full and varied timetable for himself, with plenty of activities, so that other people see him as an interesting person and a worthwhile companion.
There is a danger that the adult who is sensitive about his epilepsy may see discrimination and rejection where none is intended. If friends and colleagues are told about the epilepsy, and given guidelines for coping with seizures, they will usually respond in a positive and friendly way.
Local Groups
Many people with epilepsy choose to join a local epilepsy group, in order to learn more about the condition, to share problems, and to enjoy social activities. Local Groups can also make a personal contribution to the education of the local community about epilepsy, which in its turn increases public understanding.
Relationships
As a child with epilepsy grows up, he will need to have more information about his epilepsy, and its implications for employment, social life, marriage and parenthood.
Opportunities should be found for him to participate in youth activities, including trips and holidays away from home, so that he becomes increasingly self-reliant.
Marriage and Parenthood
If one parent had idiopathic (unknown cause) epilepsy, the risk of a child developing it may be slightly higher, depending on the type of epilepsy and the family’s medical history.
If both parents have epilepsy the risk may be further increased. In most cases however, the risks are small. This is a subject to discuss with your consultant or G.P. Many men and women with epilepsy enjoy marriage and parenthood, and bring up healthy children.
Incontinence
If you know that you are incontinent when you have attacks and your epilepsy cannot be completely controlled, you may think it advisable to keep spare clothing at work.
Discos
Only a small proportion of people with epilepsy are affected by flashing of flickering lights. Most people can attend discos without any problem.
Employment
If career plans have been disrupted, do not waste time brooding. Seek professional advice. Although certain occupations may be unsuitable because of the danger to yourself or to other people ( eg. working at heights, working with open electrical circuits, working near water, work involving driving) there are many jobs that the person with epilepsy can do.
Sheltered employment is available in many parts of the country for those who are not robust enough for open employment. However, many people with epilepsy can and do work in open employment.
Jobseekers Guide
This brochure has been produced to answer those questions most commonly asked by jobseekers with epilepsy, and to outline the basic steps in developing an effective jobsearch strategy. You need a good deal of preparation and planning to find a job in today’s competitive labour market.
Every jobseeker should have a jobsearch strategy. If you have epilepsy, you may also have to consider some additional issues.
Developing a Jobsearch Strategy
Before you start looking for a job, you will need answers to the following questions:
- What do you want to do?
- What are your strengths and what can you offer an employer?
It helps to choose something you will enjoy doing rather than taking the first thing that comes along. Seeking advice from someone who does the kind of work you are interested in can also help.
It may seem obvious but an employer will be more likely to employ you if you have a genuine interest in the job. It is also important to be realistic about your ambitions. You may become frustrated and disheartened if you seek a job for which you are unqualified or unsuited.
Your epilepsy should not influence your choice of work unless there are obvious hazards involved in that area.
Making the Most of your Jobsearch
Securing a job involves more than just looking in the paper or sending off 100 resumes every week. A well-prepared jobsearch strategy gives you the edge over other jobseekers and helps you make the most of your time.
You will also gain confidence because you know what you are going to do and how you are going to do it.
Your jobsearch strategy may include:
- Preparing a script so you know what you are going to say to employers on the telephone, in letters and in person
- A commitment to make at least three personal visits to employers every week
- An undertaking to make at least three telephone calls to employers every day
- Regularly visiting job centres, reading newspapers and contacting employers.
The hidden job market
A large number of job vacancies are not even advertised. These jobs form part of the “hidden job market” which you can only access by actively seeking out vacancies.
This involves
- Asking family, friends and acquaintances to be your eyes and ears in the job market
- Approaching employers in person as well as the usual telephone and letter applications
- Keeping a written record of employers you have approached and recontacting them after a month or so
Jobsearch services
There is no shortage of services available to help you find work but you must be willing to go out and use them. Libraries, job centres, youth access centres and a range of government sponsored training courses are there to assist you.
Local libraries, for example, provide books to help you put together your own jobsearch plan.
Should I tell an employer about my epilepsy?
In deciding whether or not to disclose your epilepsy, consider the following questions:
- Will my epilepsy affect my ability to carry out my work?
- Is my employer likely to find out, whether I tell them or not?
- Do my workmates need to know in case I have a seizure at work?
If you think an employer needs to know that you have epilepsy, then it is better to tell them rather than to have them find out for themselves.
If you seizures are so infrequent that they don’t interfere with your work, them you may decide that the employer does not need to know.
How do I tell an employer I have epilepsy
The way you react to your epilepsy and learn to deal with it will often determine the reactions of others, including employers. Many people fear discrimination if they disclose their epilepsy. However, HOW you tell an employer will often determine their reaction.
Being prepared to talk openly and to explain your epilepsy at interviews is better than simply stating that you have epilepsy. By understanding the employer’s concerns and addressing them, you can give yourself a better chance of securing the job. You are also giving the employer an opportunity to understand your situation.
It is important for you to keep your epilepsy in perspective. After all, a job interview is all about your ability to do the job.
Original courtesy of Epilepsy Foundation of Victoria: Revised April 2002
Travel
Epilepsy Passport
Before you book your holiday:
You should plan on travelling with a companion unless completely confident that you will not need any sort of assistance from anyone whilst you are on holiday, especially if you have any disabilities. It is not the responsibility of hotel staff or resort representatives to attend to the personal needs of clients.
Consider the best time of year to travel as excessive heat in some countries could cause problems. Travelling outside the peak months can mean slightly cheaper prices, less crowded resorts and a cooler climate.
Booking the holiday
Be honest in stating your epilepsy. In order to book a holiday for yourself, and particularly accommodation which is suitable, your travel agent, will need information about any limitations imposed by your epilepsy. This includes not only details on difficulties concerning seizures, but also any impairment of mobility or incontinence.
The necessary arrangements can then be made. Be sure to point out any special facilities or care you will require upon arrival at your destination, for example, any special room or transportation requirements.
Before you go
Take out adequate medical insurance. Check that medical facilities are available and that your insurance will cover the cost, or that you can afford to pay for them yourself. Medical expenses can be reclaimed in EC Countries by using an E111 form. Ensure that you have more than enough medication to last the entire holiday, including a written prescription for your epilepsy drugs – with dosage amounts clearly stated – in case of emergency.
Check with your airline before you travel to see if they require medical certificates, eg. British Airways need a medical certificate from your physician while Swissair require a standard medical certificate.
Travelling and medication times
Airlines on request remind you of medication times during your flight. If medication is to be carried, for customs purposes the items should be in their original container and clearly marked. Be careful to adjust your medication schedule get a gradual transfer to new times zones. The usual interval between taking your medication should be continued. Before departure establish a pattern of times to take your medication during the flights, on arrival and during the adjustment period. If required, consult your physician for advice.
Sleeping
Travelling abroad can often disrupt sleep patterns due to early departure times or long journeys. Lack of sleep can often bring on seizures so every effort should be made to maintain the number of hours that you normally sleep.
Drinking and eating
In hot climates there is a temptation to drink large amounts of water or soft drinks to stop dehydration, but you may find that too much liquid can cause seizures. Try to keep this in mind during your holidays. Alcohol can interfere with anti-epilepsy drugs. It produces a brief suppression of seizures and then a rebound. The more alcohol you drink, the more serious the rebound.
Low blood sugar can cause seizures so when travelling try to eat regularly and if this isn’t possible due to flight times, take a snack with you.
Getting about
1. If cycling, helmets should be worn and very busy roads avoided.
2. When walking, you should not be close to the outside edge of the pavement, try to avoid walking close to water and cross the road either by subway or marked crossing.
3. If using public transport try to keep away from the edge of the station platform, stand clear of any doors and avoid travelling upstairs in a bus.
Accommodation
If the hotel offers balconies for its rooms you should consider the risk this could involve if you have a seizure, similarly if you have to climb stairs rather than using a lift take the appropriate care. On arrival at your accommodation check for sharp objects which could be harmful to you during a seizure. Take the same precautions relating to bathing abroad as you do at home.
Night Life
Discos and nightclubs should be avoided if you have photosensitive epilepsy.
Sport
Sport involving water, eg. swimming or fishing is perfectly safe as long as you are accompanied by a friend or relative who can be nearby in case of an emergency. Cycling should only be considered if you do not have frequent seizures. If horse riding, head protection should be worn.
Health
There are certain illnesses which will affect your medication including infections and traveller’s diarrhoea, both of which cause fluctuations in the levels of anti-epileptic drugs in the bloodstream for different reasons. Seek medical attention should you suffer from either of these conditions for more than 24 hours. The use of anti-malarial agents can affect your medications so check with your physician before taking them.
Driving
In general the granting of a licence is done after a period of 2 years being seizure free. Hiring a car abroad may therefore be subject to restrictions so check with the hire company or tour operator for details.
Insurance
When taking out holiday insurance check the small print as companies may not insure you if you have epilepsy, because it could be said that there is more risk of an accident occurring. Check under the pre-existing medical condition clause, which many companies have now removed, to see if you are covered. Enquire at your national epilepsy organisation about insurance companies which do not discriminate against people with epilepsy. You may have to pay a somewhat increased premium.