Felicity was diagnosed with epilepsy in 2015 and shares her experiences of living with epilepsy whilst studying to become a nurse at university.
How did you feel when you first found out you had epilepsy?
I was diagnosed with focal epilepsy with secondary syncope in November 2015.
I had a fair idea about the condition as my son Daniel (now 10) was diagnosed with focal epilepsy with secondary generalisation in 2013 and Blair (now 6) was diagnosed with generalised epilepsy in early 2015.
I was concerned about what medication side effects I would have to endure and being unable to drive had a huge dent in my independence.
I was unsure if I would ever achieve the type of fulfilling career that I craved.
What challenges have you faced with your epilepsy? Can you give an example?
I am now very adept when it comes to public transport! A 10-minute drive to the hospital is roughly 45 minutes by bus.
Thankfully my National Entitlement Card covers this.
Stress and over-excitement are big triggers for me. I had a few seizures in some awkward places, including Murrayfield Stadium while watching a rather tense rugby game!
Thankfully I am now on more suitable medication and I get to see the whole game, even when we lose.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Epilepsy for me is far more than seizures. There is a lot of stigma attached to it. One of our mental wellbeing lectures was on the topic of stigma.
I told the whole lecture theatre how belittling it can feel being called “The Epileptic.” I am far more than my condition.
I am a mother, a fiancee, a friend, and a nursing student. All of these things before I am epileptic.
It is so important to put the individual before the condition, so as not to limit their own perception of themselves. I am a person who lives with epilepsy.
My memory and facial recognition are sometimes affected too, so I write everything down. I have been called the post-it lady on occasion.
How have you managed your epilepsy whilst studying to become a nurse?
Rest, medication, and hydration!
Remembering to take my medication regularly has been crucial. Also, sometimes I do have to give into side effects such as fatigue.
It’s important to rest when your body tells you to. Staying hydrated also reduces the risk of my medication giving me kidney stones.
It has been important to have a good structure for the working day since Covid has put all of our modules online.
I find that I work best in the mornings, so I do any new material then followed by a decent break and then some revision or light reading in the afternoon.
While on placement in a healthcare setting, I make sure that the nursing staff is aware that I have epilepsy.
This helps us mold my practice learning environment so that I minimise my exposure to triggers but still maximise my learning experience.
I have taken part in GP rehabilitation wards, end of life care, cardiology, and health visiting as well as spending the day with physiotherapists and speech and language therapy.
Nothing has been off-limits so far. It’s just about working together and planning ahead.
What kind of support have you received from your university?
The university has been so supportive. It took a while before I could be persuaded to speak to Disability Services within the university but they have given me so much support and encouragement.
I receive a little extra time to complete any written exams and I am able to sit in a smaller room to minimise the stress of the situation.
This also means that if I feel a seizure coming on, I can make a quick exit to a place of safety.
I have an individual risk assessment for when I am on practice placement which details things such as I shouldn’t be behind a locked door and I may need a water break during my shift.
My first placement was meant to be 12.5 hours shifts which are pretty standard in a hospital environment.
My Advisor of Studies sat down with me and the charge nurse and we agreed that I could work shorter shifts and gradually build-up to the full length so that I could adjust to the levels of work.
The University also applied to the Student Awards Agency for Scotland (SAAS) for a Disabled Students Award.
This Grant gives me access to things such as taxis to placements that are far away or printer ink so that I can print out my lecture notes and not have too much screen time.
I have to also mention my fabulous friends who keep an extra eye on me during long, warm lectures.
We make sure that I sit near the end of an aisle and one of them will come and check on me if I take a long time going to the toilet etc.
I was even a recipient of the Bruce Johnstone Scholarship during my first year. This is an award given to students who have had to overcome adversity to gain a place at university.
Do you feel your epilepsy has stopped you doing what you want to do?
Epilepsy hasn’t stopped me. I won’t allow it to! Sometimes it’s about finding an alternative route to your goal. Yes, there have been times when it has thrown a bit of a spanner in the works.
I missed some time on placement after a particularly nasty seizure, but I worked with the university to find a way for me to stay on course. Having an open and honest dialogue is so important.
I have always wanted to help people. I did put off applying to university because I had the misconception that my epilepsy diagnosis would stop me from working. It turns out that all I needed was a few minor adjustments.
Living with a chronic condition myself has helped me empathise with some of the patients that I have met during my training.
A diagnosis can really knock your confidence at first. It’s good to be able to listen to their worries with a little understanding of what they are feeling.
What would you say to someone who has epilepsy and is worried about going to university?
Get in contact with disability services as soon as possible. They will be able to advise you on every aspect of your student life from how to stay safe on campus, to any special requirements for both learning environments and halls of residence.
Get registered with a local GP, they come to freshers week here. I would advise arranging an appointment to go over how your epilepsy affects you and your individual care plan.
I would also recommend wearing a medical ID of some sort and having your emergency contact stored in your phone under “ICE”.
That way if you do happen to have a seizure on campus people will know that you have epilepsy and who to contact.
Be open and honest with your faculty staff. They cannot help you if you do not tell them that you are struggling whether that is due to your epilepsy or other factors.
Make sure that you pace your studying so that you get plenty of rest and recreation too! Set an alarm for your medication too. It’s so easy to forget when you have such a hectic study/social life.
Most importantly get stuck in and enjoy yourself! Sign up to a society to help you make friends, you are a student for such a short time. Don’t let your condition define you! Go out there and be your amazing self!
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at firstname.lastname@example.org or call 0141 427 4911.