A Partner’s Perspective on Epilepsy

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 s

eizure.

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.