Category: Voices & Stories

A Partner’s Perspective on Epilepsy

People see someone having a seizure.

I see the person I love having one.

That is different.

I feel the fear. I feel the emotion. I feel the pain of watching it happen. Sometimes I feel angry too — not at the person having the seizure, but at the situation and what epilepsy can do to both of us.

I am there to help, support, care and love.

But that does not mean I never feel frightened or overwhelmed.

Sometimes, inside, I am crying out for somebody to help me too.

Not because I do not want to be there.

Sometimes I simply feel stuck.

It is never just, “It’ll be over in a minute”

For me, a seizure begins with what if?

• What if this one is different?
• What if they have hurt themselves?
• What if something is broken?
• What if there is bleeding I cannot control?
• What if they were eating and there is still food in their mouth?
• What if they cannot breathe properly?
• What if I was in another room when it started and I have missed something important?

I cannot be beside my partner every second of every day.

Normal life still happens.

I might be making a drink. I might be in the bathroom. I might simply be somewhere else in the home.

Then I hear something.

A crash.

Stumbling.

A noise that does not sound right.

I am there.

Sometimes it turns out to be nothing.

That does not matter.

I would rather check a hundred noises that turn out to be nothing than ignore the one that was a fall.

Then I have to work out what has happened

If I find my partner on the floor, my mind immediately starts going through everything.

• Have they hit their head?
• Is there blood?
• Does anything look broken?
• Is their breathing normal?
• What were they doing before it happened?
• Were they eating?
• Is there anything around them that could cause further injury?
• Does this look like one of their usual seizures, or does something seem different?

I do the checks I know to do.

If something looks seriously wrong, I call 999.

If they turn blue, I call 999.

If there is significant bleeding I cannot control, I call 999.

If I suspect a serious injury, I am not going to pretend everything is fine.

I am constantly making decisions while also trying to remain calm for the person in front of me.

Safety does not mean control

This is something that can be misunderstood from the outside.

Being aware of somebody’s safety is not the same as controlling them.

I do not follow my partner around telling them what they can and cannot do.

They deserve privacy.

They deserve independence.

They deserve an ordinary life.

If they are having a bath, I do not sit watching them.

I might stay nearby. I might call through and ask whether everything is okay. If something suddenly sounds wrong, I will check.

That is not about watching or controlling somebody.

It is knowing how quickly an ordinary moment can become an emergency.

When we go somewhere, I am aware of things that have caused problems before. Where reasonably possible, we avoid those situations together.

It is not one person issuing instructions to the other.

It is two people adapting their life around something neither of them asked for.

The seizure can end before the difficult part does

People often understand the visible seizure more easily than what happens afterwards.

Recovery can be completely different.

There can be confusion, fear and severe agitation.

My partner may kick, punch, grab or push me while they are not fully aware of what they are doing.

I know that behaviour is not deliberate.

I know the person I love is not consciously deciding to hurt me.

That changes how I respond.

I do not shout back.

I do not punish them afterwards.

I do not wait until they recover and accuse them of something they could not control.

Sometimes I do end up bruised because I am the person closest to them while they are confused and agitated.

But my safety matters too.

The aim is not for me to simply stand there and absorb whatever happens.

The aim is to reduce harm to both of us.

If they need to move, I try to allow them space to move safely rather than automatically restraining them.

If I need to guide them away from a door, furniture or another danger, I do that as calmly as I can.

I try to reassure them.

I try to keep my voice steady.

I try to remember that the person in front of me may not properly understand where they are, who is around them or what has just happened.

Sometimes I feel like a solid tree in a storm.

But even the tree needs protecting.

Then there are the things nobody talks about

Sometimes seizures involve loss of bladder control.

Clinically, that can be written in two words:

Urinary incontinence.

Living through it is not two words.

There can suddenly be urine everywhere.

Across the floor.

Under furniture or appliances.

Across clothes.

Across the person having the seizure.

Across me while I am trying to help.

And this may all be happening while the person is still extremely confused, kicking, moving or trying to get up.

I am still checking their breathing.

I am still watching for injuries.

I am still trying to keep them away from danger.

I am still trying to reassure them.

And now there is another problem spreading across the room.

There are moments when I think:

What am I supposed to deal with first?

Sometimes I wish somebody would walk through the door and say:

“I’ve got this bit. You concentrate on them.”

Usually nobody does.

So I carry on.

That does not mean I resent the person I care for.

It means carers and partners can reach moments where they feel completely overwhelmed too.

Sometimes all I can do is stay beside them

Epilepsy does not choose convenient places.

If a seizure happens outside and recovery means sitting in the pouring rain, I will sit in the pouring rain too.

If it happens in a supermarket and my partner needs to lie or sleep on the floor while they recover, I am staying there.

I am not embarrassed by them.

I am not dragging them up because strangers are looking.

At that moment, the shopping can wait.

The rain can wait.

Other people’s opinions can wait.

Recovery comes first.

I worry even when nothing is happening

This is another side that people may never see.

We can be having an ordinary day while part of my mind is still listening.

• Was that noise something falling?
• Have they been gone longer than expected?
• Does something look different?
• Is this environment likely to cause a problem?

That does not mean our entire relationship is lived in fear.

We laugh.

We joke.

We have normal days.

We disagree.

We go places.

We live our life.

But epilepsy sits somewhere in the background.

Once you have heard enough crashes, you react when you hear one.

In the moment, safety comes first

During an emergency, there often is not time for me to process my own emotions.

First I am making the situation as safe as possible.

Then I am checking the person.

Then I am deciding whether emergency help is needed.

Then I am helping them through recovery.

My own fear often arrives afterwards.

That is something people do not always realise about carers and partners.

Someone can look calm while being terrified inside.

Knowing what to do does not remove fear.

Coping does not mean something is easy.

Supporting somebody does not mean you never need support yourself.

And loving somebody does not make you immune to the emotional impact of watching them have seizures.

Accepting epilepsy does not mean pretending it is easy

From the beginning, I accepted that epilepsy was part of the relationship.

That includes seizures.

It includes difficult recovery.

It includes mood changes.

It includes days when very little gets done.

It includes memory problems.

It includes plans changing without warning.

I did not accept these things because they are easy.

I accepted them because they come with the person I love.

I do not see them as less capable or less worthy because they have epilepsy.

And if something happens during a period when they are confused and not themselves, I do not store it away to use against them later.

I know the difference between the person I love and what epilepsy can sometimes do to them.

What I wish people understood

Caring for somebody with epilepsy is not simply learning seizure first aid.

It is learning the person.

Their seizures.

Their recovery.

Their usual behaviour.

Their warning signs.

The things that reassure them.

The things that mean something is genuinely wrong.

And alongside all of that, it is remembering that they still deserve independence, privacy, dignity and a life that is not completely organised around fear.

A partner or carer is not there to control somebody.

We are there because we care about them.

Sometimes we get frightened.

Sometimes we worry.

Sometimes we do not know what the right decision is.

Sometimes we need somebody to help us too.

That does not make the love any smaller.

What matters most

I am not beside the person I love because I have to be.

I am there because I want to be.

My job is not to stop them living because something might happen.

It is to be there when something does.

There may be seizures.

There may be hospital trips.

There may be bruises, wet clothes, ruined plans, frightening nights and moments when neither of us knows what comes next.

But I will not blame somebody for having epilepsy.

I will not blame them for something they cannot control.

And when they eventually come back to themselves, I want the person waiting beside them to still see them.

Not the seizure.

Not the mess.

Not the difficult minutes that came before.

Them.

Because underneath everything else, it is actually very simple.

I love someone with epilepsy.

And I am beside them.

This Is Me — The Untold Side of Epilepsy

This is uncomfortable to talk about. That is exactly why I am talking about it.

When I have a seizure, I wet myself. For me it is not a “maybe”. It happens with my seizures wherever I happen to be.

That might be at home, outside, in a shop, in a taxi or somewhere completely unexpected. I have even been sitting on the toilet already urinating, had a seizure and fallen off.

The seizure itself is only part of the problem. Afterwards there can be wet clothes, cleaning up, finding somewhere to change and trying to get home while I am still recovering.

If I am away from home, it can affect practical things too. I may need clean clothes before I can get into a taxi. It means thinking ahead for something I cannot predict.

I use protective covers on my bed and settee. That is not embarrassing to me. It is practical. My epilepsy already takes enough control away from me; being prepared gives a little of it back.

Why say this publicly?

Because somebody else may be dealing with the same thing and thinking they are the only person who has to plan around it.

I do not think bladder control should determine somebody’s dignity. It is something that happens to me during my seizures. It is not who I am.

This is my experience. Epilepsy looks different for everyone.

This Is Me — The Untold Side of Epilepsy

I can write it. Saying it can be much harder.

Texting is easier for me because I have time. I can read the question, think about what it means, work out what I want to say and then answer.

Face-to-face conversations and phone calls are different. If I am put on the spot, nerves can take over. I can forget what we were talking about, misunderstand the question or drift onto another subject without meaning to.

I once had a doctor ask me about my “waterworks”. I answered that I did not drink water because I did not realise he was asking about urination. It is the sort of misunderstanding that can sound funny afterwards, but in the moment I am genuinely trying to answer the question I think I have been asked.

It happens with healthcare appointments, people coming to the house, companies on the phone and ordinary conversations. The more nervous I become, the harder it can be to think clearly.

Even online, sometimes I read something and know I understand it, but when I try to reply my brain goes blank. I might only press “like”. Other times I can write a full response.

If I were at a dinner party, I would probably be the person sitting towards the back hoping nobody suddenly puts me on the spot.

I am not uninterested. I may simply need more time to process the question and find the words.

Sometimes giving me a few extra seconds makes a much bigger difference than people realise.

This Is Me — The Untold Side of Epilepsy

“But I already told you.”

I know. I believe you. The problem is that my brain did not keep it.

Memory problems for me are not limited to the seizure itself. They can affect ordinary life: something explained to me in hospital, what I went shopping for, how I am supposed to pay a bill, an appointment, instructions somebody gave me, or a conversation we have already had.

I can understand something when you tell me and still not retain it afterwards. That can be difficult for other people to understand because, from their point of view, the conversation definitely happened.

The hardest part is sometimes not the forgetting. It is trying to explain that I genuinely have forgotten without sounding as though I am making an excuse.

I’m not saying you didn’t tell me. I’m saying my brain didn’t keep it.

It is not that I do not care. It is not that I was deliberately ignoring you. Sometimes the information simply is not there when I try to retrieve it.

This is my reality, not my excuse.

Why I am sharing this

Memory can be affected in different ways in epilepsy, and everybody’s experience is different. I am sharing what it looks like in my everyday life because memory problems are not always visible from the outside.

This Is Me — The Untold Side of Epilepsy

My little safety routines

There are little things I do every day that probably would not mean much to somebody else. For me, they make me feel safer while living with unpredictable seizures.

If there are visitors in my home, I may go to the toilet with the door unlocked. It is not because privacy does not matter to me. It is because I know that if I have a seizure and fall, somebody can get to me.

If I am only going into the bedroom to fetch something, I will often say where I am going. That way, if I do not come back, my caregiver knows where to look.

When I have a bath, knowing my caregiver is close by helps me feel safer and more relaxed. It is reassurance for me, not a claim that bathing is risk-free.

If I get a taxi to my mum’s, I send a quick message when I arrive: “I’m here.” It is only two words, but it lets the person waiting at the other end know that I completed the journey safely.

I also use protective covers on my bed and settee because I lose bladder control when I have my seizures. I would rather prepare practically than pretend it does not happen.

None of these routines stops my seizures. They simply give me reassurance and a little more confidence to carry on with ordinary life.

We all do things differently

What helps me may not suit somebody else. We all have different seizures, different circumstances and different ways of feeling secure.

These are mine.

This Is Me — The Untold Side of Epilepsy

Sometimes I have to slow down when I am laughing

I love laughing. I still want to laugh, have fun and enjoy myself like anybody else. But I have learned something unusual about my own seizures: if I laugh too much or for too long, it can end with me having a seizure.

Sometimes Dave will tell me to calm down or slow down a little when I really get going. To somebody who does not know us, that could sound as though he is trying to control me. He isn’t.

He knows my seizures. He has seen what can happen when my laughter goes too far, so he is trying to help me settle before I reach that point. He is not telling me not to laugh. He is watching out for me.

That is one of the strange things about my epilepsy. Stress and being very upset can affect me, but so can something completely opposite: laughing and enjoying myself too much.

I still laugh. I still have fun. I have simply learned that sometimes I need to slow myself down, and sometimes the person beside me notices that before I do.

Why I am sharing this

Seizure triggers are very individual. This is not me saying that laughter triggers seizures for everyone with epilepsy. It is something I have noticed repeatedly in my own life.

This is my epilepsy. Yours may look completely different.

By Stephanie Adams

There are seizures I experience, and there are seizures I only know happened because somebody else tells me.

That is one of the strangest parts of epilepsy for me. I can wake up sore, confused or injured and not have a complete memory of how I got there. Sometimes Dave can tell me what he saw. Sometimes the cameras can fill in parts neither of us caught properly in the moment.

Why I have cameras at home

I have cameras in each room apart from the bathroom. They are not there because I want to watch myself all day. They are there because epilepsy can leave gaps.

If I fall, injure myself or behave in a way I later cannot remember, the footage can help answer a basic question: what actually happened?

That matters medically, but it also matters personally. When memory is missing, uncertainty can become its own problem. A recording can sometimes show whether I fell first, whether a seizure was visible, how long I was down, or what happened in the minutes around it.

The witness sometimes knows more than I do

After some seizures I can be awake without being fully recovered. I may be confused or unable to remember what I have done. Dave can be standing beside me with a clear memory of the event while I have almost none.

That creates a strange imbalance. It is my seizure, but sometimes somebody else holds more of the story than I do.

Injury without memory

If I am bruised or hurt afterwards, not knowing how it happened can be upsetting. The cameras can sometimes remove the guesswork. They can show whether an injury came from a fall, furniture, the floor or something that happened during recovery.

For me, that record is also reassurance. It means an unexplained injury does not automatically become an argument about what somebody thinks happened.

It is not the same as a seizure alarm

The cameras do not make me safe by themselves, and they are not a medical seizure detector. Their value for me is evidence after the event: the ability to go back and understand an experience I may not remember.

The part people do not always understand

People often think memory loss means forgetting something later. With epilepsy, it can also mean never properly forming the memory in the first place. That means I can be present for something without being able to tell you afterwards what happened.

For me, the cameras are about that gap between being there and remembering being there.

This is a lived-experience account. It is not medical advice, and home monitoring is a personal choice with privacy and consent considerations.