We exist to improve the lives
of everyone affected by epilepsy

People with epilepsy fear discrimination according to national charity poll

24 Mar 2016

“I used to hide my epilepsy because I was worried that people would be scared of or blank me. I now realise this was the wrong thing to do.” Craig Fairclough shares his story for Purple Day to raise awareness and encourage others to open up about their epilepsy.

Craig FaircloughHe has had epilepsy all his life, but it wasn’t properly diagnosed until the age of 22. He has focal seizures that can make him seem absent. They can also make him shout out and swear. He can have up to four seizures in one day.

Craig, who works for the NHS East Midlands Ambulance Service and used to be in the Royal Navy, used to keep his epilepsy hidden from those around him. He was afraid that people would treat him differently if they knew about his condition.

Craig said: “I used to hide my epilepsy because I was worried that people would be scared of me or blank me. I now think that I was wrong to do this because it only led to more confusion when I had a seizure. I now speak openly and honestly about my condition, both to those around me and on social media. My seizures can sometimes look like I’m in a drunken stupor and it would be great if everyone could recognise it as a seizure and know how to help. I have told myself that I will not be ashamed of my condition. Speaking out has really helped my confidence and my safety.

“Epilepsy is a really misunderstood condition. This Purple Day, I would love it if everyone could take the time to learn a little bit about epilepsy so that they will be able to help someone like me.”

UK-wide charity Epilepsy Action surveyed almost 700 people with epilepsy to explore how they feel about talking to others about their epilepsy. Of those surveyed, 1 in 5 (19%) people with epilepsy said they feel uncomfortable or very uncomfortable talking about their epilepsy with friends. One in 7 (14%) feel uncomfortable or very uncomfortable talking about their epilepsy even with their family. One in 4 feel uncomfortable talking to work colleagues.

The top 3 reasons people gave for feeling uncomfortable talking about their condition were fear of discrimination (or being treated differently), concerns that people don’t understand epilepsy and feeling embarrassed.

Respondents who are not seizure free were more likely to indicate that they feel uncomfortable talking about their epilepsy, especially in a work setting. Worryingly, three-quarters (75%) of people who do not feel comfortable talking with their employer, and are not seizure free, said that they fear they will be discriminated against.

The findings come in the run-up to Purple Day, the global awareness day for epilepsy, celebrated on 26 March each year. Purple Day was created in 2008 by then 9-year-old Cassidy Megan, a Canadian girl living with epilepsy. She came up with the idea as a way to dispel the myths surrounding epilepsy and raise awareness positively. The event sees purple-themed fundraisers taking place all over the UK, as well as several landmarks turning purple to mark the event.

Philip Lee, chief executive at Epilepsy Action, said: “It’s frustrating to hear that many people with epilepsy feel embarrassed talking about it, and worry that they will be discriminated against if they do.  Epilepsy is certainly nothing to be embarrassed about and these findings highlight why days like Purple Day are so important to those living with epilepsy. The more we talk about epilepsy, the more we can challenge common misconceptions about it and offer the general public a clearer idea of what epilepsy is. We really hope Purple Day inspires people to share and talk about their epilepsy.”

Comments: read the 17 comments or add yours

Comments

MS and Epilepsy.I've lost confidence after having a seizure at my Nephew's Wedding in front of lots of people I didn't know. It was so difficult to see even my Family after that. I totally support Purple Day to hopefully get more people to understand how difficult it is for some of us coping with Life let alone Life with Epilepsy

Submitted by Margaret Tetley on

Hi Margaret
It’s great that you’re supporting Purple Day. Let’s hope it gets more and more people talking about epilepsy and finding out what it can be like living with it. Having a seizure in front of people can really knock your confidence, can’t it? Do remember the helpline team is here to help and support if you felt talking to someone would be helpful. It’s freephone 0808 800 5050.

Best wishes.

Shelley
Epilepsy Action Advice and Information Team

Submitted by Shelley, Epilep... on

I didn't have a seizure until I was 41 and a 2nd at 42 I am now 51 and I've just had a 3rd and now have been diagnosed Epileptic, I have been told my seizures were down to over tiredness and stress and to top it all off I've been a scaffolder for the last 33 yrs, I have lost a couple of jobs due to people's narrowmindedness I'm about to loose another job or I feel I will because of my last seizure 4 weeks ago, I have no reason not to tell people and never hidden the fact, but now I feel isolated for the first time since my first one, and don't have any confidence in my employer, what can I do where do I go from here I have no idea

Submitted by Wayne Fletcher on

I've had epilepsy all my life but it was only fully diagnosed when I was 11yrs old when I had a grand mal seizure but when I learnt more about the seizures I realised I'd been having the simple partial seizures all my life. There are a lot of people out there that are very nice if you are open and honest about your epilepsy and quite often you will find there are more people out there with a connection to the condition than you think if you are open about it (lots of people have friends or relatives with the condition so they are very understanding) but occasionlly you can come across people who will treat you as though you are a stupid idiot because epilepsy is a condition to do with your brain. When I come across these people I usually say to them 'At least I've got a brain and I've had the scans to prove it (I've had EEG's!) whereas you're not showing any signs of having one.' Having this as a reply for anyone who might be rude about my epilepsy means I can be open about it to everyone I meet and most people I find are very understanding if you are open about you're condition.

Wayne, your employer has a 'duty of care' to you and needs to be understanding about you epilepsy and how it can affect you. 'Duty of care' seem to be the words used for equal opps at the moment. Put them into a search engine on your computer and you will come up with some sites that will give the you the definition and the things your employer should be doing to help you continue your job regardless of your epilepsy. You shouldn't just be losing your job.

Submitted by Rachel Copeland on

Hi Wayne

Sorry to hear your story with employers that have a duty of care for you and cannot just fire you because you have epilepsy. This is discrimination and need to follow up with a union if you have one or do contact Epilepsy Action directly for more advice, I wish you well.

Craig

Submitted by Craig Fairclough on

Hi Wayne
Sorry to hear your feeling go isolated. It must be tough for you with the nature of your work.

Working at height obviously has safety implications.  But due to your diagnosis of epilepsy you are covered by the Equality Laws.

If you contact our helpline team directly, we can talk to you a bit more about how you are feeling and your employment situation.

You can phone our freephone helpline 0808 800 5050. This is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Sacha on

I had 2 episodes of focal seizures when I was six over my legs.No treatment advised.After that I had no seizures,but it reappeared as petit mal and partial seizures.The partial seizures was undetectable.I detected it later when it happened over my neck muscles.Mild ripples only.The petit mal seizure presented with depressive illness and so I got treated with a low dose of anti-psychotics and the experience was horrible.Ten years later after being on this anti-psychotics,entire body would go into one single jerk with LOC for a second while sleeping.I was started on Valproate and clonazepam.EEG was taken.Here epilepsy is associated with possession states by demons,so the faith healers beat the patient and torture him to drive away the demons who they consider are responsible for the seizures.I lost many good jobs or had to turn them down which caused economic hardships.This resulted in my sister commiting suicide and my mother dying rather prematurely due to financial crunch though I a a medical doctor by profession.But that has not helped me in any way to support myself or my family.I was assaulted and I ended up in a rehab center where they started carbamazepine which adversely affected my testosterone level and I am taking replacement therapy for the same.Mean while my wife forced me to go in for a mutual divorce.Now I am learning Medical Transcription to change my job.There are sleep problems.Hypertension and Diabetes developed as a complication of valproate therapy.A few years back I also realised I am on the autism spectrum.Asperger's syndrome.That was bad news.The social support system for such conditions are a big zero out here.I used to play cricket and basket ball,but now my reflexes are down and on one occassion a cricket ball passed through my helmet and lacerated the soft tissues just below the orbit.I do still bump into objects inside my room,unless I make a conscious effort to keep away from it.It does not happen as a reflex.Peoples behaviour too are bad.I too do not leave any stones unturned to express my resentment.

Submitted by Ramesh on

Dear Ramesh
You have clearly had a lot of struggles in your life. I do hope the information about Epilepsy India which I sent separately, is of some help to you. Also we have an online community where you can talk to other people with epilepsy from all around the world. You might find that really helpful. It’s called forum4e. I do very much hope that after all these trials life will become a little easier for you.

Cherry
Epilepsy Action Advice and Information team

Submitted by Cherry, Epileps... on

I work for a religious institution and was discriminated against purely through ignorance and the disregard of a medical practitioners opinion. Made my depression a lot worse and received no apology for causing me so much upset.

Submitted by Paul du Plessis... on

Hello Paul
This must have been very difficult for you.

We are aware that people with epilepsy still face prejudice and discrimination about their epilepsy, and this is why one of our key goals is to raise awareness of epilepsy. We have also focused on this in our campaign work, such as our what does epilepsy look like campaign.

As a person who has epilepsy you are protected in the workplace by the equality laws. This means that an employer should not treat you differently because of your epilepsy. You may find it helpful to take a look at our work booklet, which will help you to know your rights in the workplace in future.

If you ever feel that you are being treated unfairly in the workplace then you may be experiencing discrimination. Organisations such as Advisory, Conciliation and Arbitration Service (ACAS) and Equality Advisory Support Service (EASS) can offer specialist employment and equality advice in this situation.

I can hear that this all had a negative effect on your health at the time. You may find it helpful to take a look at our depression information. Some people tell us that finding ways to reduce stress and look after their wellbeing at times like this has made a positive difference to them.

I hope that things are now improved for you. If you would like to talk more about this, or if we can be of any more help, please do not hesitate to get in touch.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

I've got uncontolled epilepsy, so I can't hide it. I'm 60 now, had epilepsy 40 years, always been discriminated against, I've suffered more at the attitude of others than with my epilepsy itself. Here in N Ireland there isn't enough information about it, and even Epilepsy Action isn't strong. There isn't enough being done on the street, though it seems there may be something being done that isn't advertised. There's no information about epilepsy provided in hospitals, GP surgeries etc

Submitted by Gail Barry on

Hello Gail
Many people have told us about experiences which sounds similar to yours. Although attitudes towards people with epilepsy have changed over time, there is still a long way to go to remove stigma and discrimination. We are working hard to improve awareness and understanding of epilepsy, as you can see from our key vision and goals.

We are also working hard in Northern Ireland. You may want to contact our Northern Ireland manager Clare Watson, who will be able to tell you more about our work in your area.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Next week is National epilepsy week and hopefully more and more people are understanding what the condition is. Some folks are born with it, others develop it while the others have an event that causes it.
None of us should be ashamed of it ....

Submitted by Mark Daker on

People do have stigmas against people with epilepsy.I went into my nurse training 30+years ago and told the director of the hospital about my condition.This was ok.I passed my exams had been seizure free throughout my nurse training and had no problems.It was at this time a new drug came out and I was put on it.This made my epilepsy uncontrolled.It was then the hospital decided not to give me my pin no.I was offered a payout which I didn't take.I went with my soliciter and won the case and got my nurses pin.I would tell anyone if you have a ambition don't let epilepsy or anyone stop you from achieving it.

Submitted by yvonne on

Hi Yvonne
Thanks for sharing your experience. It’s great to hear you challenged unfair treatment by your employer and won. As our survey showed, many people with epilepsy still worry about discrimination. We hope that by talking about epilepsy, people will face less stigma. If anyone else reading this is worried about unfair treatment at work, our information about work and epilepsy and the equality laws may be useful.

Best wishes
Grace
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

I was encouraged to hear Craig's story. He wiĺl inspire many people who feel scared alone and cautious of what others think about their epilepsy. I have had epilepsy for 42 years and wish I had the guts to say yeah iv got epilepsy and actually feel OK saying it! Cos it is OK. But I try to open up but quickly shut down if I belive people don't believe me or don't quite understand, this leads to a lonely existence! I have always believed sharing a problem is halving it but I find epilepsy so difficult to just share. After reading Craig's story I have asked my collegue to celebrate purple day next year as she has two children who have epilepsy which my heart goes out to her as I would find that really difficult to cope as I would rather have it than my children! Hats off mandy!♡ so I write tonight inspired by Craig who once felt like I do but if Craig is being brave....I'm joining him and so many others to fight the stigma! Thanks Craig!

Submitted by Ann Delbene on

Hi Ann
Many thanks for your appreciated comments!

Submitted by Craig on

Question about your epilepsy?

Use our email helpline service -- your question will be sent directly to our trained helpline advisors who will reply to you. If you post a question about your epilepsy as a comment on a page, it may not be replied to so please use the email helpline service.

Want to talk to other people with epilepsy?

Take a look at forum4e our online community for people with epilepsy. Anyone with epilepsy over the age of 16 can join, from anywhere in the world.

Comment about this page?

We welcome feedback on the content of our website. If you have any comments about the page you were reading, then please complete the form below.

All comments are reviewed by a moderator before appearing on the site. Once the comment appears, your name and comment will be seen by other visitors to the site. Comments will be edited or deleted if they are offensive, libellous, slanderous, abusive, commercial or irrelevant. Comments may also be edited or deleted if they are not relevant to the page on which they are entered.

By making a comment through the website, you allow us to use the comment in our publicity without using your name. If we would like to use your name, we will email you to get your permission.

CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.
By submitting this form, you accept the Mollom privacy policy.