How does epilepsy limit your ability to work

[AshleyNC]

Ive had seizures for 10+ pears now and havent worked in 5. I was asked how epilepsy will limits my ability to work and wanted to ask for a few of your personal experiences. Please Help!

[Hidden]

Hi there, I have now had epilepsy for 41 years and have only just stopped working for 7/8 years. Depending on the job one does, obviously safety and security counts in the workplace. I was always in an office job, and employment was easy. One has to be logic as to what type of work one wants to do. Unemployment is now so vast worldwide, that more are unemployed in the end! All the best to finding employment. It may be a battle in the beginning!

[Jenny25]

It doesn't. I have never been out of work and have worked for the same big multinational ftse10 company for years. They have always been supportive and understanding and even pay for me to see a private neurologist in London. I work in an office and obviously would be unable to do certain jobs that involve driving etc but I am determined epilepsy will not stop me leading a 'normal'life.

[sporan]

Hi Ashley,

I think your question is very difficult to answer because epilepsy is such a varied and personal condition.

Some are unable to work others can work regardless. It very much depends on how YOUR epilepsy affects YOU.

I have to say that it is obviously easier to stay in work than to find new work simply because if you are in work the disability rights laws help with making your employer make 'reasonable adjustments' to allow you to continue in your current employment plus any new employer would be able to get a current reference from your current employer about your performance, abilities and attendance regardless of the epilepsy.

However if you are unemployed, despite government and jobcentre assurances and training, it is very easy for a prospective employer to disregard your application on the grounds of there having been a more suitable candidate and even if you withhold your epilepsy until interview or job offer stage, although if you recieve a job offer it becomes harder for them to 'back out' but at the job offer stage or trial period stage it is better to inform your employer of your condition simply because if they do not know then you could potentially put others and yourself at risk, depending on how your epilepsy affects you, plus you are likely to loose the protection of the disability discrimination rules.

My guess would be that your best chances would be from either a small, caring family concern or a large corporation that is trying to improve its equality of employment status, positive descrimination probably, but still makes it more likely to succeed.

Hope this and the other positive replies here will be of help.

Kindest regards

Sporan.

[Hidden in reply to sporan]

Hi Geoff fancy finding you here im in this group too now n not working like Ashley.

We're worried we haven't heard from you in a while.Hope you're well!!

Xx

[sporan in reply to Hidden]

Hi Karen,

Thank you so much for your concern. Just having a bit of a bad run at moment. Emotions all over the place and feeling rather low.

Also my poor old Mum (85) has just been diagnossed with myloma so haven't felt up to much.

A bit frightened I guess to show my weak side.

I've been on epilepsy research for a while but have found the headway site more relevant as the epilepsy is caused by the tumour and I get more symptoms n stuff from the tumour than the E.

Hope you are keeping well.

Geoff xx

[Hidden in reply to sporan]

Sorry to hear about your mum that's sad news.im not too bad now I've been started on epilepsy meds.I did get quite poorly at one point and was having up to 15 seizures a day.they think temporal lobe epilepsy.waiting eeg and another MRI.

I feel for you and hope amongst everything that's going on you get your spark back at some point.We all miss you on headway. Look after yourself as well as others.

Xx

[sporan in reply to Hidden]

Hi Karen,

Sorry to hear your E is so bad.

I am fortunate that my seizures are complex partial so while I run the risk of walking in front of a bus I don't fall to the floor and hurt myself with spasm as some do.

The fatigue after is the hardest for me to cope with and the lack of confidence in myself.

The eeg I had was clear but due to location of tumour and description given by my wife the neuro was confident in the diagnoses.

The tumour is in the left medial temporal lobe and with the control drugs I have I now have seizures that I'm aware of around once or twice a week on average but that being an average means some weeks nothing and then a series of several, often a couple of times a day.

I've looked for and found some triggers, mostly tiredness, stress or trying to conentrate too long on a single task.

Sometimes I get 'auras' before and attack. I can't explain what they actually are bu I just 'know' when its about to happen although unfortunately this is only on rare occasions.

The control is difficult for me because it is caused by the slight changes in the tumour so is progressive.

My next MRI is this Sunday so hoping that it is as just before Christamas with no significant radiological change.

Take care and hope that soon the control drugs will kick in for you.

It can take time as its a balancing act and what works for one may not work for another. Epilepsy seems to be a very individul condition with no two people being the same.

Thinking of you and wishing you well soon

Geoff xx

[Toomuchsynchrony]

I've been more or less fine working for the last 7 years at a university in London. My job involves laboratory science research so have to be careful if I feel seizure prone to not put myself in a potentially dangerous environment.

The key thing for me is that I am fortunate that my job is very flexible in terms of when I can work and where I can work. At least when doing paperwork.

Very jealous of Jenny25's private doc; and I thought my employers couldn't be much better.

[DarrenC]

Hi there, I was diagnosed in September 99, grand mal seizure and was working as print finish engineer. Lost my job through health & safety, saying the guillotines were to dangerous to be round. I then couldn't claim incapacity benefits with the government saying my tablets made me a able bodied. I then went through about 30 jobs lasting months at a time suffering fits. Or job interviews saying thanks but no thanks after I mentioned the word epilepsy. I've been out of work since 2008 I'm a qualified car mechanic, print finish engineer, plant hire fitter and personal fitness trainer. And I'm still trying to find an answer of yes!! for work

[jules1973]

Hello i have worked for the same company for 18yrs now and when i first started having seizures after a brain infection it was pretty tough to handle but i kept going as i got older the more difficult it became i was getting more and more and they were becoming drug resistant think i tried them all so the neurologist suggested neurosurgery so i said yes ! My work couldnt have been more helpfull at the begining of december 2013 i had a right sided temporol lobe lobectomy it was painfree apart from sore heads and a lumbar puncture surgery was easy as of the end of november 2013 i have been seizure free and having the best time ever i would encourage anybody to ask about it makes a huge difference to everyday life it makes life worthwhile living x

[AMH76]

I am in a very similar position and sporan has hit the nail on the head really. If you are confident in that you think you can do that job you've got to tell them that and hope they give you an opportunity, but it needs to be a safe working environment. Once you're in and if you like it then you've made it! The law is on your side then. It's just hard to get companies to give that opportunity!

[AmyBadd]

I am the same as many others on here, not having a problem, but that being largely due to the type of work I do. I have a desk job for a large company which allows me flexible working time. This is very helpful for me because my main trigger is lack of sleep, so I can stay in bed longer if I've had a bad night.

I can't remember whether I disclosed my epilepsy on applying for this job (in the past sometimes I have and sometimes I have not), but it is law in the UK that if you disclose that you have a disbility on application AND you meet ALL of the necessary qualification/experience/skills criteria listed in the job discription you MUST be given an interview. This does not guarantee you a job by any stretch, but in a large pool of applicants, it can certainly help.

Also for me the most important thing is that I am very open about my epilepsy with people who I work closely with, so they know what to do in an emergency. I have seizure first-aid leaflets pinned up in my office and wear a medical alert bracelet at all times when I am not with a member of my family.

Best wishes,

Amy

[Talbot]

For all the digs the Civil Service has had to endure over the years, one thing I cannot fault my department on is their understanding of my disability. Following my temporal lobe surgery in 1983 my memory has not been very reliable. However, nobody in the office has taken offence in my forgetfulness. One colleague even said it was better I kept asking than by guessing what had to be done and then making a mess of the job. They don't mind reminding me of anything that needs immediate attention, and I don't take offence if I hear a request more than once. I have made notes for myself, and whenever I go to do one of the jobs I put the notes on my easel. I can come home at night satisfied that I have contributed to the day's work, and have been told before now that I am part of the team in my own right.

When I first started looking for work after leaving school I focused on two factors - a repetitive task and being clear of machinery should I have a fit. As a result, office work seemed to be a good option in my case.

[jayzee_45]

Hi Ashleync epilepsy should not be a issue with work but still in this day and age employers attitudes is disgusting towards epilepsy I have just had a issue with work myself but knowing I have the law on my side there was nothing they could do I have simple/complex partial seizures which doesn't affect me a lot so don't just give in