Lesslie Young, Chief Executive at Epilepsy Scotland looks at the huge variety of reasons people contact Epilepsy Scotland. She also reminds you we are here for everyone affected by the condition, for whatever reason you need us.

The Epilepsy Scotland Helpline and Information service is here for anyone and everyone affected by epilepsy, or those simply wanting to know more and develop a better understanding of the condition.

We know epilepsy is more than seizures, so we offer emotional support, signposting and someone to talk to for anyone who has epilepsy, their families, carers, friends, teachers, and employers.

Whether you are finding it difficult to come to terms with a diagnosis of epilepsy and need emotional support, have a practical question, are experiencing side effects from medication, have questions about the COVID-19 vaccine or just want to find out more, we are here for you.

“You look okay to me”

People with invisible disabilities and long-term fluctuating conditions like epilepsy can be and often are affected by stigma.

We know of people being questioned over the validity of their conditions and not being taken seriously enough by employers, using that old chestnut ‘you look fine to me!’

We understand and can give many examples of how epilepsy is more than seizures.

For many people it can mean short term memory loss, difficulties with relationships, side effects from medication, imposed isolation, self-imposed isolation, bullying, living with unending uncertainty to name but a few.

It is so important for people to know we are also here for people living with epilepsy who have been seizure free for a period, no matter how short or long.

Whilst Epilepsy Scotland very much supports the view epilepsy should not define any person or stop anyone from doing things, we know there are people living with the condition who may decide to ‘soldier on’ and might at times put unnecessary pressure on themselves.

For example, they might feel unwilling to share concerns about the impact of seizure activity or medication on work, schoolwork, or study, as they fear the repercussions, real or perceived.

Of course, your employer, school, university, or college must record sickness absence because of seizure activity separately to general sickness absence.

Equally, reasonable adjustments must be made because of the impact of your condition and the medication you take to manage it.

Epilepsy and Occupational Health Guide

Our Epilepsy and Occupational Health Guide is an invaluable source of information for all who find themselves in this position whether you are the person with epilepsy, the employer, or the learning establishment.

Whether you would describe yourself as having a disability or not, you are protected by the Equality Act if your epilepsy affects you in this way.

Part of Epilepsy Scotland’s vision is that people living with epilepsy have a right to be free from stigma and discrimination, and we work with the Scottish Government, employers, and organisations to raise awareness about all things related to epilepsy.

If you have experienced discrimination and or stigma, get in contact, tell your story, or connect with likeminded people in our Facebook support group and remember we are here for you.

Here for you

If you need extra support about any aspect of Epilepsy, the Epilepsy Scotland Helpline and Information Service is here for you, so get in touch.

Call our freephone helpline on 0808 800 2200, email contact@epilepsyscotland.org.uk, or leave us a private message on Facebook, Twitter or Instagram.

What people say

“You provide a fantastic service on the Helpline. My head was all over the place worrying about my son.

You have answered all my questions and I feel so much more positive now. I really appreciate your support and for providing a sense of direction.”

“Amazing service that really helps, extremely supportive and understanding with no pressure and with things as they are in the world just now. I find it a priceless service as has kept me sane and helps with seizures as it like a bit social life for me.”

“Thank you so much for your response and doing so, so quickly! This definitely reassures me much more. It’s good that we have platforms like yourselves to be able to come for advice – really appreciate it so much!”