Epilepsy?

lisamct · Oct 12, 2003

I have a couple of collegues who have epilepsy, both qualified staff and nursing assistants. As far as I know there epliepsy hasnt ever been a factor in their career although again, as far as I know, their epliepsy is very well controlled. I work in learning disabilities and we manage clients epilepsy on a daily basis so I dont know if this makes any difference.

I dont think you will be discriminated against for having epilepsy, just be open and honest about it when asked and Im sure everything will be ok:)

Lisa

Balco · Oct 12, 2003

yeah i was wondering and as i have only ever had seisures while asleep i thought it would be ok but im sure they would tell me during applying if there is a problem with it.

Balco · Oct 12, 2003

now i will have to consider whioch unis to look at i suppose it would be best to try and get in one to start spring next year rather than wait a whole year till next september .

anyone have any recomendations as which ones they would recomend. :D

bulletproofbarb · Oct 13, 2003

Hi Balco, I have epilepsy. I have a specific epilepsy syndrome, Juvenile Myoclonic Epilepsy (JME). About 7% of people with epilepsy have it. I got it when I was 13, well I was officially diagnosed then. It is suposed to be genetic but no one in my family has it.

However, I wasn't actually diagnosed CORRECTLY until I started work.

I thought I just had epilepsy and I took my pills and not a problem, apart from the side effects that weren't good but didn't interfere in my life.

However, when I started work as a registerd nurse, (I trained at Uni in Australia) my epilepsy got severely worse. I was at work one day when I had myoclonic seizures and I was working on a neurology rehab ward. Anyway, there was a registrar who asked me if I knew what was wrong with me and I told him I had epilepsy and he said "yes, but what type, do you know much about it". I told him that the specialist saw said when I was 16 it would go in about five years so since I was 22 at the time, I said "oh, all I know is that soon it will go awy". He must have thought I was a right idiot. Anyway, he had a bedside manner of a mouldy dishcloth but he said that I had no idea what was wrong with me and he wrote me a referral to a specialist epileptologist of which there was only one in our state at the time.

Anyway, as it turned out I was diagnosed with JME and one of the provoking factors was shift work. So, I was unable to work night duty (WooHoo ) Okey, there has to be an upside to having epilepsy.

However, over the years I learnt that other nurses don't like nurses who can't do night duty. All the places I have worked don't have and won't employ permanent night staff so it ment the day staff would have to rotate regularly. Apparently, me not doing night duty put a big strain on things in one place so in the end I left. I worked for about 10 years before leaving the hospitals.

I went to work in a completely different 9 to 5 job that involved more mental than physical work, not to say nursing doesn't involve mental work but this was mentally gruelling, it's hard to explain but just believe me! Anyway, I was okey there but after a couple of years my epilepsy got bad again and I was treated badly at times and made to feel like I couldn't do things. At one stage I was actually not allowed to do certain parts of the job and I have never felt so belittled and humiliated in my life. The last straw was when I applied to do a course to act as a preceptor and was denied on the grounds " I may get sick and it would be inconvienient". I put in a discrimination claim, with the plan of leaving anyway, but waited till the person who had said this had been disiplined by Human Resources and the day I found out she had and I was granted on the course, I handed my resignation in. She never spoke to me of course, she was a nurse too, staff development. We got on very well prior to that incident. I just don't make allowances for peoples ignorance just because they are friends or work colleagues. I am always upfront and teach people about JME, I have articles i give them. I wasn't going to stay in an uneducated environment. I just wanted to make a point. Some people think it was cruel, I have no regrets doing it and I would do it again if I had to.

Anyway, recently I applied for a new job at a lovely hospital near my home and told them I was unable to do night duty. They said that all staff had to do nights and asked me to apply for some positions that were vacant. they assumed that I was going to do night duty. Anyway, I told them the reason and all of a sudden their was no vacancies. The reason I am up front before I am employed now is because I can do without little minded people making my life a misery.

I was recently employed in another hospital on a lovely ward and they knew that I had epilepsy before they gave me an application, I told them that I couldn't do it and that if it inconvenienced them, then not to waste my time (but much more politely put!!). They offered me a position and only required a letter from my specialist (who happens to work two floors below me) and it's not a problem.

I have never minded anyone knowing the reason why I can't do nights. I'd rather they knew that talk about me behind my back.

I had no idea my epilesy would affect my nursing, but, I would do it all again because I love it and would be a nurse if I had my time over.

Recently, I started doing double shifts (14 hours) and so far have been okey. I also had my medication changed about 2 years ago now, and have gone 14 month seizure free, longest period in my life. I am now 35. My doctor is aware I do 14 hour shifts and they do make me tired but I will only do them before my days off at the moment, just in case. I do take the extra tablet every now and then but have always done that when I felt like I was not 100%. Also, I know when I am going to have a seizure so the times I have been in that position, I have always been able to remove myself and tell someone.

Currently and most importantly, I am doing my UK nurses registration to come and work in the UK next year. I have paid out just over $600.00 AUS and after that I will find out if my epilepsy will affect my application. Unfortunately, the NMC wouldn't save my time and theirs beforehand so I am just hoping. I have been told their are nurses in UK who have epilepsy.

My parents always told me not to mention my epielspy when going for a job but because of my experience in the past, it's the first thing I tell them, if they have a problem with it then I don't bother with them. I do agency nursing at times too and no one wants to know or cares. Hhmmmmm, not sure why the hospitals aren't the same.

Anyway, don't get put off by my story. I can only advise you to be upfront and professional about discussing it. Don't use it as an excuse for not doing something and most importantly, take care of yourself. I don't work full time either, I work 4 days a week. That way I know I won't get run down and over tired.

Best of Luck and keep well,

Barb

Balco · Oct 13, 2003

Hi well thanks for that reply it does answer a few questions because i know doctors say people with epilepsy should really keep a regular sleep pattern going. Which i understand why you dont do night shifts when you say you have some seizures are they awake ones or sleep ones or absences etc?

:)

bulletproofbarb · Oct 14, 2003

I have myoclonic, absence and grand mal seizures. They happen within the first two hours of waking. That is specific to JME though. As far as I know, I have never had a seizure when I was asleep.