JOBS AND EPILEPSY: i have been trying... - Epilepsy Research...

Epilepsy Research Institute

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JOBS AND EPILEPSY

WHYADUCK2 profile image
12 Replies

i have been trying for years to find out the statistics for people who have epilepsy and a job, andpeople who suffer but do not have a job _ can anyone help.

Thirty years ago i used to have a job ; computers IBM system 38 and ICL1900 2600 vme ; dme , geor and geor+opereating systems , but after losing my job ,not had one since ( the mere mention ends the interview - and yes i have tried other jobs cleaning etc not just computing )

I then disrupted a couple of discs in my back and this got me onto incapacity benifit, but of course the rules have changed , so i am now fit for work and no one has touched me with a barge pole in thirty years (yes thirty years only the last six on incapacity) .

I have got on my bike as tebbit told me ( all around the country - spent over three grand trying to get a job ) ,

So i would love to know the statistics as no one seems to know. ( cheers and thanks for reading the rant - hope it makes sense)

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WHYADUCK2 profile image
WHYADUCK2
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12 Replies
Chimbelina profile image
Chimbelina

I wish not only the government but also the media would pick up on stories like yours. The balance is wrong in their aim to get people back into work.

Those that are able and really want to be employed should have every support and more needs to be done about the prejudice directed at people living with epilepsy.

On the other hand there are those that are simply too ill to work or their condition fluctuates or they may have memory difficulties making it virtually impossible to be a reliable employee. In these cases these people have a right to self respect and should not harassed as it only makes their condition worse and their self esteem low.

Instead people with chronic illnesses could be supported to work from home on a flexible basis according to their condition and skills; either in a self employed capacity or else linked to established businesses with a support worker to provide the link between the working environment and home.

I agree there should be statistics available on this. Perhaps we should start with a pole on this site.

My son was constructively excluded from his school when diagnosed with epilepsy and now has no GCSE's or A Levels. He is having to study at home through the Open University and we are planning that eventually he will have to be self employed and work from home.

I suggest two polls: one for work and one for schools.

damobosher profile image
damobosher in reply to Chimbelina

Im the same can not find one who will employ me the fits are regular and memory loss is a factor .but can work just as hard as any one else

SandyH profile image
SandyH

Hi Chimbelina

I have drug resistant epilepsy and I worked for the public sector, now they were fantastic with me and I was an administrator, plus I was a Unison Rep & Unison H&S Rep, they gave me all the help I needed. But then my epilepsy got worse and they offered me medical retirement, I refused it for 2 years but it cam to a point where I had to take it as it was interfering with my job. But if you have epilepsy that is controlled by drugs and they are not employing you because you have epilepsy then they are breaking the law Disability Discrimination Act. Get some help with the Citizens Advice, or apply for jobs within the Public Sector they employed me and they knew I had epilepsy...hope this was helpful for you, if I can help you any further please don't hesitate to ask.

Sandy

harpy1 profile image
harpy1

Examples of questions you should never ask in a job interview

How old are you?

Where were you born?

Are you married?

Do you have children?

Do you plan to have children?

Have you got a disability or chronic illness?

What’s your main language?

Are you a UK citizen?

What religion are you?

How much longer do you want to work before you retire?

What are your long-term career goals?

Have you ever been arrested?

We’ve always had a man doing this job, so how do you think you’ll cope?

Questions you can ask at interview

You can ask about health, provided that it’s to do with a requirement of the job that can’t be dealt with by making reasonable adjustments. You can also ask about health to find out if someone needs help to take part in an interview or selection test.

You can ask if someone is disabled if you are using positive discrimination to recruit a disabled person.

If you want more in-depth expert information - from an employment lawyer - on how to hire someone correctly, then read our guide Employment Law Made Easy. Packed with tips and expert advice on complying with employment legislation.

So, if anyone is asking you about your health as a means of discriminating you in getting that job, they are breaking the law.

rustypen31 profile image
rustypen31

When we have epilepsy, industry subjects us to discrimination. When I initially had epilepsy I was fired from my first office job for laziness because I made too many mistakes, though epilepsy was still to be diagnosed. After that, for the rest of my life I could only get labouring jobs, though I managed to obtain an OU degree!

Chimbelina profile image
Chimbelina in reply to rustypen31

Well done you for getting your OU degree! That is a real achievement. My son had to leave school without qualifications due to ill health - [ Epilepsy and Chronic Fatigue (ME/CFS) ] and he has just finished his first module with the OU on the long road to regaining his lost education. He is now 19.

rustypen31 profile image
rustypen31 in reply to Chimbelina

It's good to read that your son has finished his first OUmodule. What is the number of the course? It may help him to be creative. Though not getting any decent job, I indulge in many creative acts, from designing Xmas cards to writing poems and short dramas.

Chimbelina profile image
Chimbelina

It was the Arts Past and Present and he is now starting Creative Writing. The aim is to get through 1 or 2 years and then decide to continue with the OU or use the qualifications to get back to mainstream university if he is well enough by then. He is also musical and so I hope he will find his 'place' again one day :) In the meantime we try to raise awareness about epilepsy particularly as my niece died last year of SUDEP.

You are right though... there are many creative outlets one can still enjoy; there are less barriers than in the work place. Maybe the answer is to try to turn a hobby into a career and embracing 'life long learning' can be very rewarding...

nishaatnasar profile image
nishaatnasar

I have epilepsy to I have a degree in law I want to do an interior design course will it help to improve it please help its really bad

gerrymob profile image
gerrymob

I was diagnosed with epilepsy in 1968 aged 26 and was invalided from the army. In all my working life until I retired I never told one employer and I changed jobs often. If I had mentioned it on the job applications I would never have been employed. Epilepsy was looked on as a mental problem and I believe a lot of people still think that way. I would never had got life insurance on cover for a small mortgage, I would never had got a mortgage. I worked in the middle east for many years with no problems and did a lot of air travel long distances. I supported two wives and a partner and my own children, at one time seven children. The partner whom I had been living with over four years, when I asked her to marry me turned me down, I lost her and her five children but we still keep in touch. I retired fifteen months before I was 65 and never had a day out of work I din't want. I believe keeping quiet about my epilepsy was one of the reasons I got jobs and kept them, the other reason was because I worked my backside off. In the last few years I have been very open about my epilepsy and found no prejudice with people I know.

There is too much stigma attached with epilepsy and the public at large and I don't think anything will change in the foreseeable future.

Best wishes to everyone out there in the there and keep taking the pill.

Peace

Gerry

Marky78 profile image
Marky78

I’m saddened to hear a lot of your negative experiences regarding employment and epilepsy. I have always declared mine at job interviews and have never experienced discrimination. I suppose I’ve been lucky that my employers have only asked if there are any requirements needed to adapt my working environment etc to support me. Perhaps it depends on the nature of ones epilepsy.

I had been diagnosed with generalised epilepsy as there was no particular cause or diagnosis. It was put down to lifestyle as I was young, had poor sleep patterns, binge drinking at weekends, poor diet etc, almost self imposed if you will. Out of interest how would one be able to claim that they were being discriminated against if unsuccessful in an application for employment? I mean surely the potential employer wouldn’t state that directly?

wul004 profile image
wul004

I was a,(Very Good!) Time served,(5 years!),/ Plumber + Heating Enginer. but following major Brain surgery / in a Coma for 9 months after a Brutally Tramutic event left me with Epilepsy I was told by a medical review board that I would 'Never work again'! and awarded a ,(kind of!!??) sum of money by the criminal injuries compensation scheme pay a 'lifetimes' expenses,(???). you can imagine how long this lasted??..paying my mortgage./ 3 kids/ and a forever increasing cost of living!!

Divorerse /basic friendships/social life/ reasons being ;- who wants to 'go about ' with someone who can collapse without warning so giving rise to mood swings/ personality changes ..now at 56years old living alone in a council flat near the hospital and local shop assistants to talk to/ sometimes even!!...bushes/trees or the odd dog walker.

after years of this Government turns around tells me "never mind medical opinion we're telling you you are fit for work??!!" Ha. ha ha.....year of stress later....High court Ruling and my Epilepsey was made worse...I am back to Square one!!!

Lonlier and a worry induced wait on the dhss;s method of revenge on me!!!