Our Helpline and Information Officer, Uschi Stickroth provides some information and helpful pointers for people who have been recently diagnosed with epilepsy.
It’s never easy being given a diagnosis of epilepsy. Like everything else, you will need time to process the information and what it may mean for you.
Here’s a quick run-down of helpful pointers. If you know anyone who has just been diagnosed, please share!
It’s ok not to be ok
It’s normal to feel all sorts of emotions when confronted with a new epilepsy diagnosis. This could be anything from denial to shock and upset.
You may feel your world’s been turned upside down. Epilepsy doesn’t have to put an end to your life’s aspirations and dreams.
Contact Epilepsy Scotland
Know that you are not alone with this. We are here for you.
If you don’t know where to start, have lots of questions, or just need to talk, contact us. You can get in touch with us on our freephone confidential helpline 0808 800 2200, email firstname.lastname@example.org, or contact us on our social media platforms.
Epilepsy is not a rare condition. In Scotland alone, around 55,000 people have epilepsy.
People cope better when they get together to give each other support. Join our private epilepsy support group on Facebook.
It’s a lovely community of people affected by epilepsy. Hearing from others how they’ve coped with some of epilepsy’s challenges can be helpful and reassuring.
When like-minded people get together, powerful things can happen!
Get informed about epilepsy
Epilepsy means different things to different people, not everyone’s epilepsy is the same. Not every seizure is the same, there are many different types of seizures.
You might find it useful to read up on epilepsy or talk to someone to find out more. Once you understand the condition better, you may feel more empowered and in control.
There are a lot of things you can do to help yourself; you are not powerless. Our information section on our website has a large selection of information leaflets.
They are free to download, or contact us if you want a copy emailed or sent to you. If reading up on epilepsy triggers further questions, contact us.
Take your medication
We can’t stress this enough. Anti-epileptic drugs (AEDs) must be taken exactly as prescribed and every day to be effective. Even forgetting just once could trigger a seizure.
AEDs are absorbed into the body and carried in the blood to the brain where they work to stop the spread of unexpected or extra bursts of electrical activity.
It is this excessive burst of electrical activities that cause seizures.
Never stop taking your AEDs suddenly unless you are advised by your specialist.
The majority of people can have their seizures controlled by medication. That’s something to bear in mind.
If you work, epilepsy doesn’t mean you will automatically lose your job. In fact, most jobs can be made safer with some adjustments, and there are laws in place to protect you against potential unlawful discrimination.
Your employer will always need to do a risk assessment to see if they can put measures in place to help you in your job.
We can talk you through some of the rights you have, and how and where to get further help from.
Also, check out our Occupational Health and epilepsy guide for more information on what your employer should do to support you.
Help others understand your epilepsy
This doesn’t mean you have to talk to everyone straightaway. Not everyone needs to know.
Start with yourself, most people need to process and understand first before they can talk to others.
When you are ready, if you wish, start with those you live with, friends, colleagues or teachers. Explain how your epilepsy affects you and what support you may need. Remind them, epilepsy is different for every person who has epilepsy.
Having a supportive network of friends and family will help you cope better in the short and longer term.
Epilepsy is not all of you!
Epilepsy is just one part of what makes you, there is so much more to you than just your condition.
Don’t define yourself or let others define yourself in terms of your epilepsy only.
Epilepsy needs to be taken seriously and treated with respect but don’t let it rule your life.
If you have been recently diagnosed with epilepsy and would like to talk to someone, please call our freephone helpline on 0808 800 2200 or email email@example.com.