Awards in 2016 where I won the Inspirational Shining Star Award. You may be reading this because you know me in person, or you are doing some research into Epilepsy & Work-whatever has brought you here, thank you for stopping by.
Epilepsy is something that is very close to me. I was diagnosed at 10, but we think my seizures happened long before and we just didn’t notice due to them being so brief at the time.
Something I was always told either by strangers, people online and playground banter was that I would never live the life that everyone else will live. As soon as someone found out I had Epilepsy they would apologise, they’d tell my Mum how awful it must be to have a child with epilepsy. I didn’t know what ‘life’ I was meant to lead at the time, I just knew I felt like I wouldn’t ‘Make it’ because that’s what people said. I never wanted to be a Millionaire, I never wanted to own a huge house and be a Managing Director, I wasn’t fussed by designer clothes, all I wanted was to have a job I liked or loved, have a roof over my head and be happy.
As the years went by, my seizures worsened but I never wanted to be known as the girl with Epilepsy, so I kept going. I got all my GCSE’s, I got all my A-Levels and I was so proud of myself.
I have had a few jobs since leaving college, and this is what I’d like to share with you.
My first job was an apprenticeship, and I was having a lot of seizures on the job. We got me an Alert-It fall alarm to help me when I went down to the factory as I was out of sight and it was great at alerting my colleagues if I went down-which was a lot. I think they called an ambulance over 20 times whilst I was there. The medication I was on just wasn’t working. They never once disciplined me or questioned by ability to work, I always got the job done and met deadlines but I chose to leave the job due to my fear of them letting me go, so I chose to walk away before I got too much of a liability.
At the time I was working in the Factory, I also met a lovely young man called Dan, I’ll come back to him though.
I wasn’t sure what I wanted to do, I knew I loved technology, making websites, anything to do with computers, I loved Photography, film & media and I just loved people. I love everything about working with people, being around them, talking (I do that…a lot).
My Mum mentioned about applying for a job at our local hospital, which at the time was about 15 miles from our house. I was worried about getting there due to not being able to drive, but after looking into it, I really liked the idea because there are lots of people there! I found out I could get a disabled persons railcard which would help my travels.
So in 2014 I applied for another apprenticeship as I could get the chance of getting a qualification from it if it went well. It was in the Medical School. I was scared, in fact I was petrified. I went for an interview and they offered me the position later that day. After a few checks, Christmas and New Year, I started in 2015.
It was great, and I learned so much there. And whilst I was there, I didn’t suffer a seizure in the workplace once! It was going so smoothly; I met a lovely lady on the same corridor as me who also had Epilepsy, and everyone was very understanding and open to learning what to do if something happened. I was Emily, I wasn’t ‘The one who falls down a lot’.
I truly found the real me whilst I was there. In the following year, April 2016 actually, I suffered a very prolonged seizure on the main road when doing a car share with a very kind lady from the hospital. We held up a lot of traffic and I was intubated and blue lighted to urgent care there. We’re not really sure what triggered it but I recovered after about 2 weeks and was back at work
In the June I completed my NVQ and it was time for me to leave and find another position as it was only a years contract. I was sad to go but I had grown and I was excited for my next chapter. I got a full time job on the Renal Dialysis Unit at the hospital, I started there in the July of 2016 and not only was I working with lots of people, I was able to use my medical knowledge from my apprenticeship and implement it, the patients were also absolutely wonderful and I enjoyed it. It was science, people, medicine and fun all in one. Everything I love essentially.
The hours were very long though, they were 13 hour days. I moved out from my parents and got a small house near the hospital to save travelling early hours of the morning and late at night on the bus/taxi to try and make the days less long. It did cut a lot of time out which was great. Oh, remember Dan who I mentioned earlier from 2013? Well, he was still with me on this mad journey, he stuck by me. The house was small but we managed as he was still studying Nursing at the time so a lot of the time it was me living there alone.
My seizures worsened, I had one prolonged one on shift and everyone was incredible and I got wheeled down to Medical Assessment and got kept in for a week. It was embarrassing but I was in the best place really. I managed a while there before my Epilepsy Specialist told me that it really wasn’t going to work as they did a 24hr EEG and it detected 147 episodes of seizure activity, and I needed a job that was normal working hours and less strain on my body. I was 23 and I didn’t want my life to be the way it was, so I listened to the advise.
The Unit were great and allowed me to try flexi hours but it didn’t help.
I was really sad to go but I knew it had to be done if I wanted to get my life back. Dan helped me find another position before I left the Unit as I just had no idea what I wanted to do but I knew I’d know it when I saw it advertised.
I saw a position in Medical Outpatients at the hospital, so I applied there and got the job.
I left Renal, said goodbye to the staff and the patients and my little white uniform and off I went. I started in September 2018.
It was good to get into normal working hours.
Still remember Dan? Well he qualified as a nurse and we bought our new home in the December 2018, right by the hospital which was ideal for us both! We can both walk there in 10 minutes.
We were also engaged and due to marry in the February of 2019.
My seizures continued but not half as bad.
We got married in the February and it was beautiful, the day we dreamed of and seizure free.
We then went on our honeymoon in the May and I was very unwell and my seizures continued to worsen. There was talk of surgery, of going on Sodium Valporate, nobody really knew what to do for the best really. I was told if I went on Sodium Valproate we couldn’t have children of our own. Dan and I talked extensively about it and knew that if it had to be done, we would do it because my health comes first.
In the August of 2019 I was admitted to hospital after 4 back to back seizures and not waking up, and that is when I asked them to take me off one of my medications as I didn’t think it was benefiting me and they agreed to try it before putting me on an additional one. I came off it and by September I was no longer having hundreds of seizures, my managers allowed me to transfer to another role with reduced hours to help me and I’ve been absolutely grand since.
I started the new job in October 2019, we are a really hard-working team and a fairly new one too. Everyone is lovely, my managers have been great, so flexible and my Epilepsy has honestly never been better.
It is an office-based job, I work 9-4 5 days a week and I am the old Emily again. I love going to work, I am safe, everyone has been very open in asking me what they need to do if I do have a seizure, we have a seizure care plan booklet that we keep in the draw and everyone knows my emergency contact details, my seizure types, they know what medications I take.
When looking for this work before, I don’t think I took into account what may trigger my seizures. I didn’t think about the long hours, the travel time, the work environment. I don’t regret the jobs I went for before, because they shaped me, they helped me grow, I have made amazing friends in each place, I have developed skills from each one. But I know now that the best place for me is an office, stable hours, a place I can have a break if and when needed. I still get patient contact now via telephone, I get to talk to them, I am learning more every day, my team support me, we have fun and I am me again. It’s important to always declare your Epilepsy to your manager and team-mates because you protect them and protect yourself. Never, ever be embarrassed about having Epilepsy. Your colleagues want the best for you. It is also good to be in a Union should you ever need someone to protect you job-wise.
If you are just leaving School, College or University and are entering the world of jobs, please don’t rush into anything. Please make sure you are doing what is best for you, as you need to keep YOU safe. Declare your condition because you will find that people will be a lot more understanding of any sickness absence or medical appointments. I feel like everything that happened to me happened for a reason, and I am meant to work in our hospital, I feel at home there, so make sure you find a job you feel yourself in, because you are in work a long time.
Do you remember Dan? Well, he is becoming a Dad in August 2020, and I am becoming a Mum. After my seizures became controlled and I knew I didn’t have to go on Sodium Valporate, we knew we wanted to start a family. We found out our dream was coming true on Christmas Day 2019.
