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For many people, receiving an initial diagnosis of
epilepsy is an unsettling time. You may respond to the news with all
sorts of emotions including disbelief, anger and depression.
Ideally, you can reach a point where epilepsy
becomes an aspect of everyday life, not the dominating influence, but
this adjustment may take time.
There are a range of skills and techniques that can
help you to adjust, however, it does take motivation to act on these
suggestions and not everyone is at the stage where they can do this on
their own. Most of us have times when we feel low and feel that we
cannot find the resources to help ourselves. Don’t try to deal with it
yourself if you feel this way. There are many avenues for support and
assistance including the trained counsellors at the Epilepsy Foundation
of Victoria, your doctor and other professionals such as psychologists
and social workers. The Epilepsy Foundation of Victoria can help to
arrange this for you.
The skills and techniques described here have been
developed by health professionals and from the experience of people with
epilepsy themselves.
Understanding your epilepsy will help put the issue
into perspective and dispel misconceptions you may have previously held.
You are also likely to gain the best control of seizures if you are
fully informed about the type and particular patterns to your epilepsy.
Being well informed is likely to give you confidence
in talking to others about your epilepsy and allow you to clearly
explain your point of view to health professionals, colleagues, friends
and family.
Books are videos that explain epilepsy and its
treatment are available at the foundation’s library. The foundation’s
brochures Understanding Epilepsy and Managing Your Epilepsy
will offer you a good starting point.
You can find out more by talking with the foundation’s
counsellors and your doctor.
Your attitude to epilepsy will influence your
emotions and behaviour. It’s possible to learn to substitute positive
thoughts for negative thoughts. For example rather than saying to
yourself "I am going to have a seizure, I know I am.", try
saying to yourself "I’m not going to have a seizure". The
mind is a very powerful tool. Some people find that positive self-talk
can actually prevent seizures.
Too often, it is our negative experiences which
colour our view of the past. Instead of focusing on all the times you
have had seizures, think of all the times you haven’t and you are more
likely to find that seizures constitute a small part of your life. It’s
often a matter of putting things into a more realistic perspective. For
example, worrying about having a seizure in a certain situation is
actually wasted energy, because the seizure may not even occur.
It may also be helpful to deal with negative
thoughts by saying to yourself, "If it does happen it’s not the
end of the world, I’ll continue to be a worthwhile person."
Epilepsy can lead to lifestyle restrictions for some
people. Being unable to drive is a common example. However, for most
people with epilepsy the restrictions are few and the choices in life
are broad.
Enjoyment and meaning in life are often gained
through participation, pursuit of interests and relationships. Think
about your options and who can help you make them a reality. Try to
enrich your life by doing things you are interested in, things that
satisfy you, that give you a sense of accomplishment and a sense of
meaning as an individual. Epilepsy is likely to become a less important
issue as you become more absorbed in positive, fulfilling aspects of
your life.
Everyone has a different way of coping. Try to
capitalise on your own strengths and abilities. Explore what makes you
feel good about yourself. Ask yourself "When do I feel good and
what am I doing to make myself feel good?". When you have
identified these things, do more of them and you may find you feel good
more often, and that having epilepsy will become less significant.
Some ideas for things to do include learning
relaxation techniques, playing sport or exercising, developing a hobby,
joining a group or learning something new. Getting involved can be
difficult, so start with something small which will help you gain
confidence to take the next step.
Every time you take a positive step towards
adjusting to epilepsy, remember to acknowledge the courage and
determination you have shown. If you have a day where you feel
overwhelmed by the changes in your life, try to be kind and patient to
yourself. When you are feeling down, it may be encouraging to look at
all you have achieved and congratulate yourself.
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