Epilicia: How Epilepsy Gave Me a New Nickname

We're lucky that through our work we're able to meet and connect with many incredible individuals with powerful stories to tell. In this guest blog Alicia Simmons from Voices of Stoke shares her experiences of receiving a sudden epilepsy diagnosis and the impact it has had on her life and her work.

Six months ago I was an independent woman, I didn’t need help from anyone.  I had enjoyed my teenage years like most teenagers – (drinking white lightening at the park and lying to your parents about where you had been) – I had left home for university, gained my degree, backpacked around the world for three years, returned to the UK with bracelets adorning both arms with numerous feathers in my hair, was working a job I loved supporting the most vulnerable adults in Stoke and was supporting myself quite successfully!  Then I had a seizure.

It was a traumatic experience, but much more so for my partner who had to save my life, than it was for me.  As far as I’m concerned, I have no memory of the event, so I ‘wasn’t there’.  My boyfriend who had to drag me off the bed whilst violently fitting, eyes rolling back, whilst desperately scraping the vomit I was choking on out of my throat, certainly does remember, and knows I definitely was there.

So, I went to the GP, on my boyfriend’s stern advice.  Then to the hospital, on the GP’s instruction. I saw a consultant, who very quickly said “this is easy for me, the description of your seizure as well as your history tells me you are experiencing tonic-clonic epilepsy.”  What?  Epilepsy?  “I was tested when I was 7”, I say in disbelief, “they found no epileptic activity”.  The consultant gave an empathetic smile and said, “I believe you were misdiagnosed.  I will refer you for further neurological testing to ensure there is nothing else causing your seizures but please be certain, this is a clinical diagnosis and you do have epilepsy.”

It’s what comes along with this one little word that will follow you for the rest of your life.

I have epilepsy.  The sentence meant nothing at the time.  Epilepsy.  It’s just a word.  It’s what comes along with this one little word that will follow you for the rest of your life.  You quickly learn that ‘SUDEP’ means Sudden Unexpected Death in Epilepsy.  That’s a lovely acronym to read up on.

Then you realise you’ll be visiting the hospital a lot.  The receptionists at the Doctors stop asking your date of birth because you’ve been there so often they know it by heart.  The chemists get your prescription ready when you walk in because they already know what you’re there to pick up.  They’ve already written out a special receipt so I can claim back money for my prescriptions because I’m going to be on medication for the rest of my life.

It means not living on your own.
Not having a bath without someone in the room.
People suddenly worrying you’re going to have a seizure on them.
Worrying you are going to have a seizure and put whoever you’re with in a situation that will probably scare the living shit out of them.
Worrying it’ll be a bad seizure and you’ll humiliate yourself whilst being unconscious and coming around to about 11 people looking down on you with sheer terror in their eyes and you have no idea where you are, who you are or what has happened.
It’s about not being able to put the pieces together for a few hours because all you want to do is go to bed and sleep for 100 years because you’ve never felt more tired in your life.
It means relying on others to help you because you can’t do things you used to do.
It means surrendering your driving licence
It means a change in the job that you love doing.
It means handing over your case load to others.  Even though you know they can do everything you were doing for your clients, two years of building up trusting relationships comes to an end.  And, it’s because of something that is entirely out of your control.
It means being frustrated and not wanting to tell anyone because you know that some people have it a million times worse than you do.

It means losing the independence you’ve become used to.

I immediately thought back to customers I have supported with epilepsy.   Particularly one gentleman, a lovely man who has never once raised his voice, has a fabulous sense of humour and is generally an absolute delight to support.  He has suffered numerous traumatic experiences throughout his life and experiences both epilepsy and alcohol dependency.

I remember a time when I visited him and he was shaking, distant, appeared exhausted and was unable to hold a drink steady enough to take a sip.  We went to A&E where a Doctor explained in a very matter-of-fact way “he’s an alcoholic, he’s going to have seizures.  He has epilepsy, he’s going to have seizures.  Why is he here?”  Knowing what I know now about epilepsy, I would have pushed this much further.  He must have a consultant at the hospital, a specialist epilepsy nurse, his medication should be monitored and more importantly, the medication should help reduce his seizures.  So why wasn’t this happening?  It was simply put down to his alcohol dependence and we were sent on our way with the feeling we had wasted vital medical resources and time.  My client was a pillar of politeness throughout this personal questioning and complete dismissal of his worries

A month later he was back in hospital having emergency brain surgery to remove three abscesses on the verge of bursting.  He was in intensive care for weeks and will be in recovery for a significant period of time.  As someone with epilepsy, he already had a neurological condition.  He must have had to see clinical professionals to receive this diagnosis and subsequent medication, so where were they when he was in A&E?  Could this have been identified sooner if it wasn’t assumed it was because he is alcohol dependent?  In essence, he’s lucky to have survived.  Brain abscesses are pretty rare and I will never forget walking into what felt like the scene of Holby City and seeing him unresponsive, covered in wires, with monitors bleeping incessantly and his distraught family around his bedside.

Having begun anti-epileptic drugs myself, I assure you, I haven’t felt the full quid for about a month despite not having drunk any alcohol.  My balance feels off, I feel like I can’t get my sentences out properly, words just seem to fall out of my head.  Concentrating on staying awake has never been so difficult.  There’s no more concentration left for anything else, it’s spent on staying awake and trying to keep a grip on reality.  I’m not alcohol dependant, but the above description could easily be someone presenting with alcohol dependence syndrome.

This is an experience I can compare to no other and I never expected to be in this position.  Epilepsy is the most common neurological disorder.  It’s likely you’ll know someone who is living with epilepsy but it’s not a visible condition.  That person who looks like they’re having a daydream in the corner could be having a partial seizure.

I’m a big advocate for awareness in general, but awareness for invisible conditions is necessary to avoid automatic assumptions and to ensure everyone is treated equally.

Everyone is fighting a silent battle, some are just more visible than others.  We can all benefit from being non-judgemental, kind and supportive.  Oh and keep it light-hearted.

Epilicia is my new nickname, I’ve learned from my customer that a good sense of humour goes a long way!

Alicia Simmons @AliciaJSimmons

Alicia is a Service Coordinator at Stoke-based charity Voices of Stoke supporting individuals with multiple and complex needs which includes drug and alcohol services, homelessness or mental health services.

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