I Am Here, and I Am Speaking

I am here.

I am in the room.

And people talk as if I am not.

I have a learning disability. I do not speak with words. But I understand far more than people think. I know when something is wrong in my body. I know when I am scared. I know when people are talking about me instead of to me.

For many years, I was well. I slept. I laughed. I went to concerts. I went on holidays. I had my favourite films. I loved life. I trusted the world around me. Then, in 2020, something changed. Something happened in my body. I became unwell — suddenly — and I have never fully come back to who I was before.

My life has become smaller. When I experience these chronic episodes of distress and pain. They can last weeks or months.

I don’t sleep like I used to.

I don’t eat like I used to.

I don’t feel safe like I used to.

I am frightened much of the time. If the distress and pain go away, I fear it coming back. I do not know what is happening to my body. And, neither does anyone else but they claim to do, despite not actually knowing.

I am exhausted. I am losing weight. I cannot settle. I cannot concentrate. And when the pain or fear becomes too much, my body takes over. I throw myself to the floor, not because I want to hurt myself, not because I am “behaving”, but because something inside me is unbearable and I don’t know any other way to make it stop.

This is how I communicate.

Their answer is sedation.

Doctors stand at my bedside and say things like:

“She’s very complex.”

“This happens in people like her.”

“We’ve done all the investigations.”

I hear them.

I hear everything.

But none of those words explain why I am in pain. None of them explain why I am scared. None of them explain why I am disappearing.

Instead, they say this is inevitable.

That it is genetic.

That people like me deteriorate as we get older.

That people like me age quicker.

Am I dying? Is that what they are saying to me?

Are they saying I am not worth working it out?

Why did you save my life when I was a baby, if you are turning away from me now?

Where has the care gone from when I was a baby, a young child under the care of GOSH. When everyone seemed to care. I became an adult. Became unwell. And I don't understand - where is the nice hospital ward, with staff that understand, what are these random wards, so alien to me. Where I feel so out of place.

There are days when I come back. My vocalisations return. I feel like me again, exhausted, thinner, drained but me. You can see the relief in my face. You can see it in my mum’s. She prays I stay like this. I pray I stay like this.

Then it goes again.

It is as if a switch is flicked.

I am here.

Then I am gone.

Back in agony. Back in fear. Back in exhaustion. And no one asks why it comes and goes. No one follows the clue. No one wants to know.

The label replaces understanding.

At the beginning of January, there was a meeting about me. I know this because afterwards everything felt different. Things had already been decided. Professionals came to my house, I was very unwell when they were here. They could see it was pain. They looked emotional. At last I thought, they've seen it, they'll tell everyone else. I will get the help I need now. But no, weeks later, I am still the same.

There's been more meetings.

But I was not there.

My mum was not there.

There was no agenda.

No minutes.

No explanation.

Who spoke for me?

Did they know me?

Had they lived with me, day after day, seeing what this is doing to me?

No.

I go into appointments now knowing everyone else knows something I don’t. They speak carefully. Vaguely. They look at each other. Some talk as if I do not understand. I hear them say, “people with learning disabilities just age quicker.”

I want to ask why.

Why do I age quicker?

What does that mean?

I hear them say I am “unique”. What does that mean? Does it mean no one has to try to understand me?

It feels like being in a room where everyone knows a secret about you and no one will tell you what it is. My mum knows they are holding something back. She knows decisions have been made behind closed doors. But she does not know what they are. And she cannot tell me.

Doctors come and go. Each time they repeat my story. How I present. What I am like. What has happened to me. They don’t speak to me. They speak about me, in front of me, as if I am not listening.

But I am listening.

I understand more than they think.

In hospital, my mum stays with me day and night. She is exhausted. She explains everything over and over. She is my only voice. No one asks if she needs help. No one relieves her.

Eventually, they promise they can look after me. They say they are trained. Skilled. Experienced. They tell my mum it is okay to go home and sleep.

She leaves because she has to. She is exhausted. There is only her. I know she is so scared to leave me. She feels guilty. Worried. But she needs some time out, to rest. I feel guilty also.

She’s gone. 

Then they come in with medication.

I do not take solid tablets. I never have. I only take liquid medicine. This is written down. It is in my hospital passport. It is on the door outside my room. A big poster. It has been explained again and again.

They do not read it

They do not see it

They come towards me with a tablet. I turn my head away,  the only way I can say no. They leave.

They come back with yoghurt. They encourage me to eat it. They put a spoonful in my mouth.

Too late.

The tablet is in the yoghurt.

I can feel it.

I don’t know how to swallow it.

I panic.

I am terrified.

It is gone.

My mum does not know. She finds out days later. By then, it could have been too late. I could not tell her. I could not protect myself. My mum feels so very guilty for going home to sleep. For leaving me. And they wonder why she won’t leave me again, or doesn’t want unfamiliar unskilled carers with her. 

If they say I am scared of hospitals, this is why.

No one there knows how to care for me. There are delays. Errors. Assumptions that this is just how my life is now. That this is what happens to people like me.

Then we go home.

And I am still distressed.

Still in pain.

Still unable to sleep.

Still missing my life.

Nothing was fixed.

Then come the claims it’s just the hospital making matters worse and we want to avoid admission. The delays in hospital. The failure to understand is what makes things worse. 

They could watch videos of me when I am better. They could see who I was before I became ill. They could see how far I am from my baseline.

But they don’t.

Carers come into my home now. They think this is normal for me. It isn’t. I want to scream, this is not me. They think I am difficult, challenging, even scary sometimes. I am none of those things. I am not me. They don't see the real me. The me that is under these layers of pain, distress, and trauma.

Unfamiliar staff.

Different people each night.

People I don’t know in my room while I try to sleep.

There is a stranger in my room at 10.30 at night. She is on her phone, talking loudly in a language I don’t understand. She does not talk to me. She does not explain why she is here. She just keeps talking oblivious 

My bedroom feels like hospital.

I do not feel safe.

I do not feel settled.

My mum needs help to care for me. But why are these people here if they do not know me? Why do they not know how to communicate with me? Why do they crowd me? Why do they talk about me in front of me? Why am I made to do things I don’t want to do. Why don’t why understand my signing. Why don’t they understand my body language. 

I’m unique they say. Complex. But here I am with carers who don’t know me. Don’t understand me. Who aren’t trained to care for me. That doesn’t help me. 

I have CHC funding, but like hospital, carers are sent who have never met me and do not know how to look after me.

Where has my life gone?

They all know what was said in meetings.

They do not know what is wrong with me.

They won’t share what they discussed about me. About me - me. My life. Not theirs. Do they imagine how that must feel.

They say they are worried. They say I am one of the most complex patients they have. And still, they let me suffer. They do not reach out to specialists elsewhere. They keep me where I am.

I am watching myself fade. What’s happening - I’m frightened. 

Slowly.

Days become weeks.

Weeks become months.

Marked by sedation and distress.

When my mum fights for me, she becomes the problem.

When she asks questions, she is seen as difficult.

When she cries, she is told she is not coping.

I can see it happening to her.

I know she is trying to save me.

I was never considered life-limiting. I was never accepted to a hospice. For years, they told us this was not my future.

“It’s the environment.”

“She hates hospital.”

“It’s mental health.”

“It’s genetics.”

Now the language has changed.

“People with learning disabilities age quicker.”

As if my life is quietly being shortened, not because anyone understands what is happening to me, but because no one does.

They say I hate hospital.

What that really means is this: I hate being somewhere where no one knows how to care for me. Where no one knows how to communicate with me. Where decisions are made about me without me. Where my pain is explained away instead of listened to.

It is not the building I am afraid of.

It is what happens inside it.

Now they say I need waking nights.

Unfamiliar staff.

Strangers in my room.

I just want to feel well again.

I just want to sleep.

I just want to be happy.

I am so sad. I am angry. I am cross. I am everything you would be if you were in my shoes.

They say all of this is in my best interests.

But best interests without listening, without curiosity, without inclusion, and without accountability do not feel like protection.

They feel like permission.

Permission to let me suffer.

Permission to explain me away.

Permission to stop trying.

I am communicating all the time — in the only way I can.

Through my distress.

Through my fear.

Through the changes in my body.

Through the way I move and the way I withdraw.

This is my language.

I am here.

I am trying to tell you something.

I wish you had known me before I became ill, my smile, my kindness, my laugh, my chatter, my joy, my love of people, my love of music, my love of animals, my love of life.

Please help me.

Please help me before it is too late.