I have no memory of stabbing myself – Huntington’s Disease made me do it

Stepping out of the dentist after a routine check-up, I headed to the bus stop with my partner, Kenny.

It’d been a good day – a normal one, nothing exciting, and I was looking forward to chilling at home with him and my son, Mason. 

In a week and a half’s time, we were going on holiday, and I couldn’t wait – it’d been a tough few years.

That was the last thing I remember back in June: Standing and waiting for my bus.

Then, I woke up in a hospital bed six days later.

I’d been in a coma after stabbing myself – and I didn’t remember any of it.

I was diagnosed with Huntington’s Disease back in 2014, aged 23. 

My dad told me he had the disease and that it was genetic. My grandfather and aunties had it, too.

He told me to get tested, and I was positive.

What is Huntington’s Disease?

I knew very little about it up until that point, but as I researched, I found out that Huntington’s is a rare, progressive disease that is inherited.

It’s when the nerves in your brain start to break down and degenerate, stopping the organ from working properly over time. As a result, it causes an impact on your speech, behaviour, and movement.

It can cause depression, and spark psychiatric disorders like psychosis, too.

Symptoms usually start between the ages of 30 and 50, and get worse over time, with many people dying within 20 years of getting them.

At first, life carried on as normal, but about four or five years after my diagnosis, I started to get symptoms. 

I began to stumble and experience involuntary movements. My arms would twitch, my legs would give way. 

I started to forget things – like hospital appointments, or turning the heating and oven off.

I once even left the dog at the park. 

I was starting to feel angry and depressed. In 2022, I started having outbursts of aggression from nowhere, sometimes in public.

I’d have serious highs and even worse lows, for no real reason.

Friends and even strangers would think I was drunk, tell me I was crazy, getting lairy and stumbling around – but it was just another flare-up.

It frustrated me more that they didn’t understand the seriousness of my illness.

I seemed to get agitated on the phone, and couldn’t take things in or absorb conversation. I struggled to relate to anyone.

I started losing sense of time and having blackouts. I couldn’t remember what had happened, if I’d said something I shouldn’t have to someone. If I’d been aggressive.

Over time, I became afraid to leave the house – ashamed, scared, and embarrassed of having an outburst.

Nobody around me seemed to understand that it wasn’t my fault, or that I didn’t know what was happening.

I had to quit work as a cleaner, as I was classed as a liability to the public. I ended up seeking more help from the doctor, with check-ups every six months. But they could only monitor me.

There is no cure for Huntington’s Disease. 

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Sometimes, it felt like I didn’t know myself at all. It scared me.

My partner of five years, Kenny, had never even heard of Huntingdon’s before he met me – soon, he became almost like a carer to me. Keeping an eye on my movements and behaviour, soothing me when I was down. 

I felt sorry for him, having to deal with my unpredictable behaviour.

On the day when I hurt myself, I don’t remember anything. My partner said I went into a trance-like state. 

Back at home, apparently, I looked at my phone, went to the kitchen, and picked up a knife. Before my partner realised what was happening, I’d stabbed myself in the stomach. Thankfully, Mason wasn’t there at the time. 

I needed three operations, and doctors managed to save a quarter of my bowel. I was cut open from my breast bone to pubic bone, so recovery has been a long, slow process. 

I was lucky to be alive, but terrified. I’d never done anything like that before. I still can’t believe it happened now. 

My partner is being strong, but I can tell he’s traumatised by what he’s seen. And I’m haunted by thoughts of what would have happened if he weren’t there.

Doctors have confirmed I’m suffering from psychosis and have prescribed medication. I also take medication for the likes of depression and anxiety, but there’s nothing I can do or take to slow down this disease.

Mason is too young to understand – he knows I have Huntington’s, but we’ve kept the seriousness of my condition from him for now. 

It’s a conversation we will need to have one day, though.

In November 2023, I walked 22 miles – from my home in Egremont to Keswick with Kenny, Mason, and our dog for The Huntington’s Disease Association.

It was Mason’s idea, and there was a big group of people who joined us, too. I’ve been so touched by their kindness.

I live a reclusive life – it works for me – but I’ll dedicate what I have left of it to raising awareness of this disease. 

Even if it scares me.

As told to Emmie Harrison-West

This article was originally published October 15, 2023

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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