Each person is different

Feelings
Let's face it. It's not easy having epilepsy or any chronic illness. There's so much more than just your body to sort out. You've got different feelings inside, friends and family to deal with along with a whole heap of new changes. What can you do to make it easier?

While most people feel the same way about being sick, not everyone handles it the same way. It bothers some people a little bit; it bothers others a lot.

Dealing with feelings happens in different ways. Some people express themselves through talking about it, writing about it or through art, while others may meditate, exercise or just "keep the illness tucked away", and only bringing them out when they have too.

It's important to remember that everyone is different, and what's right is what works best for you.

Getting help
The most important thing to realise is that you don't have to do it alone. There are a whole lot of people around you who can help. All you have to do is ask.

• There are agencies that can help you find work,
• Schools and universities provide extra assistance or time for people who need it,
• There are organisations like us to help you understand epilepsy and meet others with epilepsy,
• There are friends who will be understanding,
• There is family who will always love you.

Teens with epilepsy often find it difficult to openly discuss it and can find help through internet support groups.

Epilepsy Action also organises an annual ski trip to Perisher NSW for 13-16 year olds, and most of the teens that go along stay in touch.

How do you feel about it? What kind of support do you need? How do you decide who to tell about your epilepsy? And how can they help keep you sane?

As for being normal, what's normal, anyway? What matters is living your life as best you can.

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Getting on with life
You might find that as you get older and get more settled with things, it all gets easier for you. Or you might find that it gets a bit more complicated. After all there's your future to think of.

It's hard enough growing up without having an illness on top of it all!

But if you really think about it, whether you have epilepsy or not, the answer seems to be in figuring out what makes life worth living for you, and then put energy into making that the best that it could be. Make your favourite bits of life an equal priority, not just the sick bits.

Where do you want your life to go from here? Why not start making plans? What would you do if you could do absolutely anything you want?

Epilepsy should not control your life or define who you are.

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Staying independent
Adolescence is a time when you want to increase your independence and try new things. Being diagnosed with epilepsy may interfere with this.

Looking after yourself and your epilepsy is a good start.

Make sure you are seen as a person first. You are not your illness. You are a person with interests, feelings, strengths, and weaknesses, who also has epilepsy.

Let people know when you want to make your own decisions

Fight the lack of knowledge about epilepsy. Educate your close friends and teachers

No-one is saying the pathway is easy or free of obstacles, but you can get there in the end!

Believe in yourself.

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Parents
Ever since you were first born, your parents have worried about protecting you and keeping you safe.

Chances are that your epilepsy has made them even more protective. However, it is important that they do not impose excessive restrictions, and if you feel this is happening, it may be worth discussing with them what you feel you are capable of.

It may be hard for them to let you make decisions about your own activities, especially now that you're older. Our educators or your local doctor can also help here and talk to your family about it.

Your parents and family have an important part in helping manage your epilepsy. They may cope with your condition in a different way than you and it might take awhile for them to adjust.

It’s important that you work together to develop a good sense of independence.

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Being responsible

Medications
The most common treatment for epilepsy is the use of anti-epileptic drugs (AEDs). What drug you are prescribed depends on a number of things including:

• Type of epilepsy you have - some drugs work better for particular types of epilepsy
• Side effects of the medication - how a medication affects you
• How long you may be taking the medication
• Future pregnancy plans
• Any other medical conditions or medications you are taking

Show you are capable of taking your medications every day without reminding.

Sometimes, how you feel about your condition will influence how you deal with it. Denial, anger, confusion, sadness are all common feelings.

If you don't like having epilepsy and don't take the tablets - this will increase the chances of having a seizure and also pass the responsibility to your parents causing tensions and stress.

Another consequence of not taking your medication may be that you may not be able get your drivers license, or if you have a seizure, your license will be suspended.

If there are other reasons for not taking your medication regularly, like it makes you feel terrible, let your parents or doctor know and discuss changing to a medication that has less side-effects for you. Many side effects are related to the dose, and you may just need a slightly lower dose.

It is important to know that seizures are more likely to occur if:

• You miss doses
• You stop your medication suddenly - this can result in more severe seizures also
• If you have a growth spurt or gain weight - you may require a higher dose of medication
• If you have lack of sleep - eg studying late, socialising, night shift - this does not mean you cannot go out, just take care to allow for extra sleep either beforehand, or the next day
• If you consume excess alcohol - this is associated with late nights, missed medication, dehydration and changes in how the medication is metabolised in the body. You may find that the medication enhances the effect of alcohol. Try drinking light beer, or having a soft drink inbetween drinks.
• If you take recreational drugs - many 'stimulant' recreational drugs are more likely to increase the risk of seizures. The contents of a lot of these drugs are not known and their interaction with the epilepsy medication is not known

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Social life
Activities like staying up late, not getting enough sleep, missing medications and experimenting with alcohol—can increase seizures in people with epilepsy.

Friends will understand. Overdoing it will only cause seizures - leading to parents worrying and possibly restricting your activities to avoid future seizures. There has to be a balance of you still having a life, and good seizure control.

Communication
Talking to your family, being open and honest, discussing yours and their concerns is an excellent way of working together. Having a supportive family is important as they will provide you with the strength and support if you have any issues.

Tips

• Take responsibility for taking your medication
• Talk directly with your parents/ doctor/ neurologist about your condition
• Let people close to you know what to do if you have a seizure
• Make some minor lifestyle changes that can help reduce seizures
• Learn as much as you can about seizures and epilepsy
• Talk or communicate with others who also have epilepsy
  
  It is important that both you and your parents be flexible and understanding with each other.

Links

Brain facts - Explore the brain and the spinal cord

Bullying - In schools and what to do about it

ChIPS - Chronic Illness Peer Support - For people between the ages of 12 and 25 who live with some form of a chronic illness

EYIE - For young people to discuss epilepsy and its effects on their lives. International site.

Epilepsy Action UK - Information for Teenagers

Getting our heads around the brain - An introduction to the brain structure and how it works

MedlinePLUS Teen Health - General health information

Reach Out - For teens

Secret life of the brain - Take a 3 dimensional tour of the brain

The Source - Is a gateway to youth information, programmes, services, resources and entertainment for young people between the ages of 12 and 25

Tribal Well - for teens with chronic illness

Your Shout - for siblings - A site made by and for adolescents with a brother or sister with a disability or chronic illness

Y-Connection: For people with a disability - Share experiences and ideas through a discussion board and chat room

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