My name is Kirsty Page, and I have epilepsy.   It does seem somewhat dramatic to say it out loud like that; it feels more like an announcement at a support group or a confession of a disability in a film by a protagonist who then goes on to excel despite her epilepsy but never because of it…but that’s a different discussion.  Today, I just want to use it set the scene.   

I had my first seizure with I was 18, arriving as it did as a lovely surprise with a late on-set presentation, leaving me with a particular type of epilepsy defined as juvenile myoclonic.  I have (had *runs to find and touch wood) those dramatic, drop to the floor ‘grand mal’ fits (more accurately called tonic clonic seizures) that you are likely to see in film or gritty TV dramas, as well as myoclonic jerks (those pesky twitches that you may also experience when ‘falling’ in your sleep, but I used to suffer with when I was awake).  My journey to an eventual diagnosis was not straightforward and, though I tried not to dwell on it at the time, the uncertainty over what my symptoms could be and what the worst case would mean for me and those around me, was one of the most frightening times of my life.   

Although I didn’t realise it, my likely journey with epilepsy started at quite a young age.  I remember from about the age of ten, feeling tiny head twitches; miniscule and unobservable to those around me when I checked with bystanders.  I had the nagging feeling that maybe something wasn’t quite right, but it was an itch that I had no inclination to scratch.  It wasn’t until the summer before I went to university, when my brain decided to ratchet up the severity of those ‘tiny twitches’ to the degree that everyone around me was now forced to be part of my journey to an epilepsy diagnosis.   

I remember being up very early, with a plan to go out and help a friend manage her stables.  The last concrete memory I have is taking a journey to the bathroom.  My dad and brother heard me yell out which was followed quickly by a significant crash.  Everyone was suddenly awake.  My brother kicked through the centre of the bathroom door, (a fact of which he is immensely proud, but an action that did make the whole bathroom experience unpleasant for a few days) to find me seizing on the floor.  The ambulance was duly called, but I remember very little until I was on the ward in the Queens Medical Centre in Nottingham, hooked up to a drip and lying next to an older lady who was trying desperately to engage me in some kind of conversation.  Ultimately, I ended up having three more of these same episodes before getting a formal diagnosis in 2002 whilst at University.  Driving from St Andrews to Dundee to undergo a battery of tests, including an MRI, was one of the least pleasant experiences of my life.  I fully understood that my consultant was looking for a tumour to explain the seizures and that the two-week wait for the results was one of the longest waits of my life.  Epilepsy almost came as a welcome relief.   

Although I don’t remember any tonic clonic seizures, the gaps are always filled in by those around me – the people I am lucky to have around me.  Most of them are funny, others (though in the minority, more hurtful).  One notable event came during what I expected to be a rather innocuous event, watching ‘Babe’ with a friend.  Moments after she left the room, I began to have a seizure and started to choke on Coco Pops! 

It was later reported to me that she thought the sounds were those of the talking duck, but on realizing the situation was not quite as cute as that, she found herself on her knees, scraping cereal out of my mouth.  Others have reacted less sympathetically when I felt the need to alert them in case of an emergency.  “Well, that must be shit” from a tutor in my first year was not the reaction I was hoping for. 

The myoclonic jerks are different however, and to me almost represent the most tangible experience of my epilepsy that I will ever know.  I do live through them, I do remember them and when they happen, the simplest of actions become impossible.  So severely affected was I on one occasion, that whilst trying to tie my shoes I experienced continually waves of pressure on and around my shoulders and neck.  I felt as if I was being repeatedly forced down, with no opportunity to try and recover.  Eventually I collapsed onto the floor in front of my parents.   I felt embarrassed that my epilepsy was still so visible, and that people were forced to notice me but for the wrong reasons, based on something that was out of my control.   

However.  I think many of those around me believe that I do, or should, reflect on these experiences and be in a constant state of worry about how my epilepsy impacts me, restricts me and defines me.  But I don’t feel that is something I should feel obliged to do, and in fact, I am more fascinated by myself, for want of a better phrase!  Although, technically, I am not allowed to jump out of a plane (never had any intention and cannot understand those who voluntarily fling themselves out of a perfectly safe metal tube at 10,000 feet) or swim without a lifeguard (I might bend the rules a little there) or drink alcohol (I might further bend them here) my life has not been limited, I refuse to be put in a box and labelled as ‘restricted’ or ‘do not touch, fragile’.   I do not allow my epilepsy to be part of me in that way, a monkey on my back that continuously pokes and prods at me to remind me to sit down, take a step back, keep out of peoples’ way.  I do not see it as a burden I am forced to bear or struggle under the weight of.   

However, I am completely aware, that any condition is unique in terms of how individuals live with any lifelong conditions and that I am fortunate in terms of how I have been allowed to live with mine.  Yes, I take 10 pills a day (and swallowing tablets is certainly not one of the skills I would include on my CV), but I am lucky as my seizures are controlled.  I take my medicine because I am used to it and it is part of my schedule, but I do not allow it to be a daily reminder of what I live with.  But again, I am lucky, I am seizure free.  For others, whose day is punctuated by severe seizures will mean their experiences will likely not be the same as mine.   We both have epilepsy, but we are not the same.  How can we be?  Humans are too nuanced for such general banners. 

So, with that consideration in mind, ‘what’ and ‘who’ are we defining as patients when we talk about patient research.  How do I think about myself for example when I reflect on my life?  Am I a patient?  To me that sounds like someone who is constantly in and out of hospital or living with a very symptomatic disease that invades their lives constantly and unwantedly.  Am I a person living with epilepsy?  Am I a person who has epilepsy but doesn’t want to be defined by it?  In my real life, I don’t feel as if I need to mention my epilepsy. I am not visibly, socially or physically affected by it, I merely ‘have it’.   There is so much nuance therefore in how individuals live with chronic conditions, as well as how they feel they can or should communicate it to the outside world.  At HRW, we appreciate that nuance, and aim to reflect that in the way we talk to people.  

People. People is the key word for us.  ‘People’ interact with healthcare services in multiple different ways.  ‘People’ are not limited to and defined by their disease.  ‘People’ are individuals, not homogenous groups, and we seek to reflect that truth in the patient work that we do. 

To find out more about Patient Panorama, or to speak to the team directly please reach out on patientpanorama@hrwhealthcare.com

By Kirsty Page

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