Epilepsy and Employment

Many people have asked me questions regarding employment recently, and I have also found this to be a frequently discussed topic on forums.  I believe this is because the government are declaring an increasing number of people eligible for work, many of whom had previously relied upon benefits.  This change has affected many people with epilepsy.  One lady I know was having 25-30 seizures a week, is currently waiting for an operation on her brain, yet the Job Centre have declared her “fit to work”.  Obviously I think this decision was ludicrous, and I am fortunate to only have a tonic-clonic seizure once a year with absences every few months.  However, I have found my experiences with employers to be very mixed indeed.

I left school with good GCSEs – 3 A*s and 7 As – and from there went on to do my A-Levels. Again, I got good results: ABB (oh, and I was in the first year that was ‘forced’ to do AS-Levels – I got CC in these subjects, but I never wanted to do them in the first place and didn’t do either of them as a GCSE!). Out of the three subjects, I got 100% in the coursework for two of them. Not bad really.

So then comes uni. I go to a good uni, do a good course, and epilepsy hits. I start having a tonic-clonic every week, get no support and leave with just a 2:2. The last thing I was interested in was looking for a graduate job – and I doubt anybody would have taken me on anyway, so I moved back home for a few months following my graduation (which I didn’t attend).

After this few months, my parents told me “to get a job or start paying rent”. This kicked my butt into searching for a job, and I found an administration job for a major global bank. It was working evenings and my dad agreed to give me lifts there and back (with me obviously being unable to drive). This was to be my first full-time job, I would stay there for five years and also meet my husband (on the first day – ha!).

But how did they deal with my epilepsy? Because working evenings and epilepsy aren’t a great combination for me, I had quite a few seizures – both absences and tonic-clonics.  I didn’t tell them in the interview because I didn’t think it was important, but I got the job anyway.  Saying that, I don’t think their standards were particularly high.  I proved myself in terms of my working ability and was given additional responsibilities, even taking on a role above my own for several months.  However, I was not paid for this and when I applied for the same role (several times), I did not succeed in achieving promotion.  I now believe that this may have been due to the side effects of my tablets affecting my interview performance.

My now husband pushed me to claim back the time that I had been working above my role, which I did, and they agreed to pay me.  However, I was then moved department.  Following this, the department I was moved to was reviewed, which resulted in me gaining promotion without an interview. Yeeeeeeeeeeeessssssssssssssssssssssss… It felt like they did not want to get promoted, but they knew I had the skills and after that review, they had no choice but to promote me.

When I had seizures, it was quite easy because my husband also worked there.  Although there were first-aiders around, they always called him over because he knew what was normal and what wasn’t.  I know the first time I had one people were looking at me (even though they were told not to), but after the first few times they got used to it and carried on with their work!  There was one time when I had three consecutive seizures and so my husband thought it best to call an ambulance as that wasn’t normal for me.  Although I do feel that my promotion prospects were very limited, I also feel that it was the culture of the banking world back then.

I left that employer in 2010 to train to teach.  I had to pass a “fit to teach” test (ironically).  They said I was okay, but now I wish they’d failed me – they never took into consideration the side effects of the medication, and it was these that have prevented me from going into teaching.  Saying that, I did all the academic stuff okay, and the first two placements – but the last placement, in Key Stage 1, I really struggled with.  I also had a lot going on personally at that time which meant my confidence was on my floor and I had bigger things to worry about.  However, I found it virtually impossible to remember a whole lesson plan with my memory problems – no matter how hard I tried! I used all the memory techniques I could think of, to no avail.  It was also now that the slight slur in my speech became apparent – I needed to sound eloquent and confident (something else which epilepsy affects).  In addition to this, I was working from the moment I got up until the moment I went to bed, I was stressed and I knew that at some point it would take a toll on my health.  I loved working with children, but I really wished to go back to my 9-5 job for the sake of my health. People kept on saying, “but you’ve got just 6 weeks left!” and I did try… I just couldn’t do it.  Having seen my parents go through the turmoils of teaching, I believe it was a blessing in disguise…

So then I was left with nothing.  I worked briefly in a call centre (no epilepsy problems there, but I can’t imagine them being too accommodating had I have had any issues).  Then I went searching for job agencies.  This is where I urge you all to tread with caution!  Some are great – but some are rubbish…

I had uploaded my CVs onto websites, as you do.  An agency said they had a job suitable for me. I asked for details about the job – they said it was shifts (8am – 8pm).  I said that I have epilepsy so have to do set shifts and would the employer be able to make a reasonable adjustment to accommodate this, preferably 9am-5pm so that I can get the buses okay? The guy said yes.  I’d got my call centre through an agency and that was fine, I was desperate, so I went and met them.  Their office was tiny, I hadn’t heard of them, and I was the only person in there (apart from the people who worked there) who spoke English.  It all seemed very disorganised which is worrying when they’re dealing with your confidential documents.  Anyway, I went through to this teeny tiny room and had a meeting with a guy who looked about 15 in a scruffy suit and a chubby, hairy man who was dressed casually.  He started talking about the job, and I again explained about the epilepsy, and the importance of routine, and how I’d been told they would be able to make reasonable adjustments.  The older man proceeded to tell the young lad off in front of my face, saying, “Don’t you dare say anything like that again, understand?” I felt so sorry for him!!! I wanted to tell him to LEAVE!

After that awkwardness, we discussed the job.  Firstly, the recruiter had never heard of the DDA or reasonable adjustments – I had to explain them both. The job was working for Barclays (a different bank to who I worked for previously).  I’m naming them because I’m disgusted.  They said (again) it was shifts and that they doubt they would make reasonable adjustments; however, they would ring them. So, they called them. The conversation went as follows:

Recruiter: “I’ve got this woman here. She wants to work 9-5 because she has epilepsy. You wouldn’t be willing to do that would you?”

Barclays: “No, we’ve got someone who works here with epilepsy and they do shifts so I don’t see why we should do anything different for her.”

(Or something like that.)

The guy then told me that Barclays already have someone with epilepsy who does the shifts fine so they’re not willing to make the adjustments.  I have also since found out that Barclays are sexist, which is no surprise.  I would advise anyone who is female, has a disability, or has morals, not to work for Barclays.  There are much better employers out there.

I walked out of the recruitment agency crying, demanded that they destroy all details that they held of me, and knowing that I would never work for Barclays.

However, I then came across a much more supportive recruitment agency.  They looked at what I could do, got me a 9 to 5 job, and I was working there for six months.  I only left because I wanted something more permanent.

I’m now working for a very supportive employer, but I have yet to have a seizure.  I have already had a number of interviews for other jobs, and in all of them I have made sure that the employer knows that I have epilepsy so that I have the extra time in the skills test.  I also make sure I am prepared in the interviews – and it was this which made my initial temporary job permanent.  I believe that my employers are more understanding as my senior manager’s sister has epilepsy, and so she can understand more than most the side effects of my medication.  However, I know that my skills have been recognised and now that I have found a supportive employer, I look to remain with them for the foreseeable future.

Having epilepsy, I would say that working for a supportive employer is worth more than all the money in the world.

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About katesds

I was diagnosed with juvenile myoclonic epilepsy when I was 11 (though I was having what the doctors thought were febrile convulsions up until the age of 5). I'm now 28 and have absence and tonic-clonic seizures, triggered by tiredness. I've been on every AED going but it's still not fully controlled. I'm waiting for the magic cure. Epilepsy affects my life in every way but I try not to let it control me. I am not an epileptic, I am me with epilepsy!
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3 Responses to Epilepsy and Employment

  1. Pingback: Epilepsy and Employment | TheWrightWayNYC

  2. darcil says:

    I think this is very true. I’ve had more and more seizures in recent years, but luckily they’ve lined up with good work environments. If it had been this bad when I had just started working… whoooo. That would have been an awful experience.

  3. Mahmud says:

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    Thank you so much.

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