Sometimes epilepsy can be hard to come to terms with.
Some people feel relieved to be given a name and treatment for their condition. Sometimes epilepsy can be hard to come to terms with. Talking about any worries, asking questions and sharing information about epilepsy may help you, or your family and friends, to make sense of what is happening.
Epilepsy is a very individual condition: some people will have it all their life, but for others they might have it just for a period of their life and their epilepsy might ‘go away’. So for some, epilepsy is a long-term condition that requires ongoing management.
Seizure control
For most people, seizures become well controlled (the epilepsy is still there but medication stops the seizures and so it has a lesser impact on them. For others, seizures may take longer to become controlled or may not respond to treatment at all. Epilepsy might have a greater impact on them, and they may need support and help with work, education, or daily life.
Driving
If you drive, one immediate effect of having a seizure is that you have to stop driving. This is true for all types of seizures, and whether you have a diagnosis of epilepsy or not. For many people, this can have a big impact on their life and it may be very difficult or upsetting for them.
When epilepsy is a disability
Epilepsy is sometimes classed as a disability. While some people find the term ‘disability’ negative or a ‘label’ that doesn’t feel right, it can be useful to know what this term means and how it might help you access help and support.
The Equality Act 2010 is a law that aims to ensure people are treated fairly and not discriminated against. This applies to employment, school and learning, and accessing services (such as using shops, health services or leisure facilities). Groups specifically covered by the act include people with disabilities.
Epilepsy is considered a disability when it greatly affects someone’s ability to do everyday activities (such as concentrating or remembering things), over a long period of time. Epilepsy is sometimes described as a hidden disability because it is not usually obvious that someone has the condition unless they have a seizure.
Whether you feel that you have a disability or not, you are protected by the Equality Act if your epilepsy affects you in this way. Depending on your situation, there may be help available to you, such as benefits or support at home.
What help is available?
You are entitled to free prescriptions for your epilepsy medications. You may be able to get financial help towards the cost of travel to medical appointments and to work. You may also be entitled to discounted bus, rail and tube travel in some areas. You may be eligible for some welfare benefits and tax credits. If you need support with daily living or equipment, an assessment from social services may be helpful. There may be help available if you care for a person with epilepsy.