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

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. 

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

My partner 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. 

I’m haunted by thoughts of what would have happened if my partner wasn’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 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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When it comes to fashion there are certain staples we adore and can’t be without. Some of those pieces include pyjamas and co-ords, as well as a staple leather jacket and reliable jeans. 

We have found the perfect pyjama set that doubles as a co-ord from M&S’ own Autograph range, which we would gladly wear out of the house too. 

The Pure Cotton Stripped Pyjama Set retails for £40, which we think is reasonable considering you have a pair of PJs, and a daytime co-ord in one – that’s £20 per outfit, right?

Autograph Pure Cotton Striped Pyjama Set

Crafted from 100% cotton, this PJ set is lightweight, breathable and gentle on the skin. The pyjama shirt boasts long sleeves, a smart collar and button front fastening. It also offers a straight relaxed fit. The bottoms are long length, are cut on a wide leg, and feature a drawstring waist for a secure fit. Available in UK sizes 6 to 22.

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The Pure Cotton Striped Pyjama Set features the long sleeve shirt and full length trousers, which makes a pleasant change from buying separate nightwear pieces. 

This set has been crafted from pure cotton, which makes for a lightweight, breathable and ultra comfortable two piece to snuggle up in after a long day. 

Both the shirt and trousers have been cut to achieve a wide and relaxed fit. The shirt boasts long and loose sleeves, a smart collar, and button front fastening. It also features a chest pocket, while the straight fit and longer length provides a flattering fit. 

The trousers have been cut on a straight wide leg, are full length, but feature an elasticated waistband and drawstring tie to ensure a secure fit. 

These pyjamas come in a navy blue and white stripe, and it’s the pattern that makes this look more premium. Why? We hear you ask. Well, typically my striped pyjamas the pinstripe flows in one vertical direction, but this set sees the stripe on the cuffs, hem on the ankle and pocket run horizontally. Plus, my pyjamas are usually a satin texture, but the cotton material makes these perfect for daytime wear, airport attire, wearing out and about on holiday, as well as for bed. 

These PJs are available in UK dress sizes 6 to 22, and the louche fit means you can wear your true to size, though if you want an even more oversize look opt for the size up. 

We would pair with a white tank top and keep the shirt open with the matching trousers and trainers for daytime, or simply button up the shirt and team with the matching trousers with trainers or white pointed toe kitten heel shoes for the office. 

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