Hold tight to each other: an epilepsy diagnosis story

17 Mar 2022

From terrifying seizures to thoughtless remarks, Hayley’s mum and dad describe their experience having Hayley’s epilepsy diagnosed

Hayley, 30, from Staffordshire, has had epilepsy almost all her life. Her parents recall what it was like to have their baby daughter diagnosed with epilepsy.

 

DAD: Hayley was nine months old when her seizures started. It started with a twitch, the slightest of tremors in her hand, barely perceptible. The twitching became more pronounced and moved to the left side of her face and into her left arm. Hayley and I were very lucky as her mum was – and still is – an excellent nurse. As we moved through the NHS, we had a rock who could explain the things I didn’t understand and who was always by her side no matter what.

So, we started down the road. ‘Febrile convulsions’ was the first thing I heard, quickly dismissed, as she didn’t always have a high temperature. So, on to child neurology. It was possibly one of the worst days for me, my baby, wearing a nappy, twitching in my arm. Two doctors telling me it was “fascinating” and they had never seen anything like it. Not what I wanted to hear!

Upon advice of a colleague and friend, when the next seizure happened, we jumped in the car and headed for Birmingham Children’s Hospital. I don’t know how long it took, but we got there and saw the consultant neurologist, a man who was describing her symptoms like he knew what he was talking about. It felt comforting that someone was helping.

MUM: I felt relieved to have a diagnosis, but frustrated that she had to suffer for months before any treatment started. I also felt sad that I couldn’t make it better for my child, and guilty – was it something I had done during the pregnancy? I was angry as well. Angry that local medics were so thoughtless. They stood at the bottom of her cot, watching her have these seizures, saying it was “fascinating” and talking about Jacksonian seizures. As a nurse, I knew they could happen in people with brain tumours. When I asked if they were going to do an urgent scan, I was told if it was a long time to wait for the appointment, then I had to chase it up myself as I worked for the hospital. Terrified doesn’t begin to explain how I felt.

How did we manage? It was trial and error, many different  drug changes, many hospital admissions and a childhood lost.

DAD: Most of our relatives were unaware of exactly what Hayley went through. They saw very little of her seizures, they just knew she was just off to hospital. It always amazed me how quickly she recovered after treatment. I would leave to go get her big brother and she would be out of it by the time I was back. Eight hours of sleep later and she would be racing round, towing a drip stand, with not a care in the world.

It all changed with her first grand mal [now known as tonic-clonic] seizure when she was 16 at a family gathering. That frightened a lot of people that day, myself included.

MUM: There was ignorance from many. One person said “you wouldn’t think she wasn’t normal”. We were told, after a particularly worrying admission, when she went into non-convulsive status epilepticus, that if she had died it “would have been God’s will”. Hayley was bullied by children and teachers, and abused by strangers when she has had seizures in the street, as people wrongly assume she is drunk or on drugs. My daughter has suffered for 30 years, and it has been difficult at times, but no matter how bad things have got she always said: “Don’t worry, mum, there are others out there worse off than me.”

DAD: One thing I’d tell other parents in our position is that there is help out there. The front line of the NHS is stretched very thin. However the talent and care of the doctors and nurses is fantastic and there is someone there that will help you, you just have to keep looking.

MUM: One thing I’d tell another parent is to keep fighting for your child to get a specialist neurologist. Ask questions no matter how silly they may seem. Take every opportunity to raise the profile of epilepsy.

DAD: Take all the positives you can when they are well and hold tight to each other when they are not.

MUM:  Above all, love your child for who they are, not the diagnosis they have been given.

HAYLEY: Epilepsy was the hand I was dealt and I adjusted over time. But I couldn’t have been prepared for what this would mean for me growing up. Epilepsy ruined the dreams I created and wanted for myself and that isn’t something I was okay with. And, if I’m honest, I don’t think I will ever be okay with that.

I have received some of the worst experiences of my life due to this. I have been bullied, beaten, abused, discriminated against and made to feel like I’m less of a person and that I don’t matter all because of a condition. But these experiences have made me strong and brave and knowledgeable enough to help others.

My loved ones for the most part have been so strong and so supportive. My parents and my siblings especially. My mum and dad were my everything and I owe them my life many times over as without them I wouldn’t be here today. They were my strength when I was too young to have any, they always encouraged me to fight when I was too weak to and they always loved me no matter how bad things got. My brother and sister didn’t always understand why I was poorly but they always knew how to reach me and they both knew if they saw me smile that things would be ok. Sadly not everyone was this supportive. Some members of my family got very afraid to be around me and kept their distance after they saw me have a seizure.

The key thing is to remember you have epilepsy, it doesn’t have you. Feel what you need to, listen to your head and heart and speak up if something doesn’t feel right, or your triggers change, or something feels off. You are special, you are valid and having epilepsy can’t diminish that.

Hayley and her parents are just a few of the thousands of people who know that epilepsy is so much more than seizures. Isolation, fear and a lack of independence are just some of the things so many people with epilepsy feel every day. This Purple Day, there are thousands of people like Hayley who need your help.

Here's how you can make a difference this Purple Day.

Comments: read the 6 comments or add yours

Comments

Thank you to Hayley and her parents for sharing their story. I have extremely mild epilepsy by comparison, diagnosed in my early 20s, but recognise some of the discrimination Hayley has faced.
I have always had a policy of being extremely open with everyone about having epilepsy and challenged the label “epileptic” along with the other unhelpful labels ascribed to those with life-limiting illnesses such as diabetes and asthma. We are people living with an illness, not a walking illness that defines our every moment.
Being open is partly for my own safety, so that if I have a seizure people aren’t shocked and know what to do; but also to raise awareness about epilepsy.
Purple Day is important and even just telling one stranger on the bus why you’re wearing a purple ribbon will make a difference.3

Submitted by Kate

I would like to thank Hayley and her parents for sharing how Epilepsy has affected their lives. I have Epilepsy and Hayley's honesty and courage has resonated with me. Thank you so much for sharing your experiences Hayley and I am sending my Best Wishes to you and your family. Many thanks, Annie. X

Submitted by Anne Taylor

Thank you Hayley & family for sharing this, my adult son has epilepsy since age of 12 due to a ABI so he has some other difficulties as well, it can feel an uphill struggle to get the right support & people looking after you as Hayley's mum said. In Bens case it can often feel he's just on a drug test trial as his epilepsy has been so erratic but in our experience ensure where possible you have a neurologist who specialises in epilepsy

Submitted by Sue Dackombe

Speaking out about Epilepsy takes some guts. I like Hayley had been diagnosed at the age of 11. I also experienced Bullying and lost many friends. Now at the ripe old age of 55, I have not let this stop me from training twice a week. I think that the more people that know about this condition, then the less shock or horror people will have. This is down to 'Educating public in society'. Above all treat us as 'Human Beings', and not as a 'Disease'.
Wish you every success Hayley, in whatever your 'Goals are'.

Submitted by Mike McClay

Thank you Hayley for sharing your story, you are such an amazing person. So many people are affected with epilepsy and many people do not want talk about out it due to different factors. I too have epilepsy from an older age and have experienced some of the issues you spoke about. People do need to be made more aware of epilepsy and understand how it affects those who have this condition. It was very brave of you to talk about your personal story. Well done and once again thank you.

Submitted by Naheed Judge

Having epilepsy as an illness is a bind I must admit. But it is the mental grief that follows which is worse. " Am I worthy, will I get this job, why are they looking at me?"
I am 69 and had to leave the navy after I fractured my skull. This left me with epilepsy. Snide comments, disbelievers, people who thought I was a liability in the workplace, I've had it all but I carried on into retirement and working part time at a centre which employs members with learning difficulties, I loved it.
I am always looking for places where people with epilepsy meet up but they are too far away for me to go. This site is ideal and people with any form of epilepsy should not feel embarrassed about sharing stories or life changing episodes. Best wishes to Hayley and the rest of us.

Submitted by Stephen Gardener
Question about your epilepsy?

Your question will be sent to our helpline advisors.

Have a comment about this page?

All comments are reviewed by a moderator before publishing. Comments will be edited or deleted if they are offensive, libellous, slanderous, abusive, commercial or irrelevant.

We ask for your email when you make a comment through this website. This means that we can let you know directly that we have replied to you. By making a comment through the website, you allow us to use the comment in our publicity without using your name. If we would like to use your name, we will email you to get your permission.

The content of this field is kept private and will not be shown publicly.
CAPTCHA
This question is for testing whether you are a human visitor and to prevent automated spam submissions.
6 + 2 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.