The incidence of strokes in young people is rising globally, but finding a village can be a challenge

There was a lot I imagined when I thought of a stroke survivor, which was admittedly not very often.

They were elderly; perhaps with another underlying medical condition; and not in the best of health to begin with.

I was proven wrong on December 1, 2018, 29 days before my 18th birthday.

I had an arteriovenous malformation, known as AVM, at one o'clock in the morning.

I'd had a haemorrhagic stroke. 

I don't remember much of what happened, but from what I was told, my parents checked on me after my dogs started barking and found me seizing on my floor. 

They quickly called an ambulance.

I was put in a coma and had a craniotomy swiftly followed by emergency brain surgery.

When I woke up two weeks later, I couldn't move; my right side had been "disconnected" from my brain. I couldn't even lift my arm. There were no signals whatsoever. 

To add to this, I had half my skull removed so my brain wasn't pressurised.

I made friends with the other people in my recovery and rehabilitation but also couldn't relate to them.

According to the Australian Institute of Health and Welfare, men aged 65 years and older make up many strokes in Australia.

That fact checks out — most of the people in my rehabilitation were older men. 

As a young woman and a lesbian, it was very difficult to find some common ground besides having a stroke.

While I know those comments are often due to a lack of public understanding, they unwittingly create a very real sense of isolation. 

Of all the young people I've conversed with, a significant number said that loneliness and isolation were big factors in their recovery.

I think part of this was also because there was a real lack of services and support offered to young stroke survivors. 

When I was in hospital and then going through rehabilitation, there were no stroke support groups I was either offered or made aware of, let alone one for my age. 

The Florey, a major brain research centre in Melbourne, cites that until recently there were no young stroke services in Australia. 

Perhaps if there had been or if any general group had been offered, the feelings of isolation and confusion wouldn't have felt so strong.

So, when I visited South Australia's Stroke Unit at the Royal Adelaide Hospital to investigate issues in young people's strokes, treatment and recovery, and spoke to neurologist Dr Joshua Mahadevan, I was happy to hear a federal government grant through the Medical Research Future Fund is seeing that young stroke survivors' specific needs are being addressed.

"Flinders Medical Centre have a grant for a young stroke service," Dr Mahadevan said.

"So now it's quite a recent thing, anyone under the age of 50 or 45 we would refer to the young stroke service.

"So, it's just to support that aspect of their of their lives."

He also mentioned alarming global statistics for young people.

"The Stroke Foundation recently released an economic impact of stroke in Australia," Dr Mahadevan said.

"Internationally, based on studies like the global burden of disease that looks at global stroke incidents, the incidence of stroke amongst the younger population is actually rising.

"We hypothesise the cause for why the younger group incidence going up is the rise in certain cardiovascular risk factors — the biggest one being obesity — and it's kind of linked to our lifestyle. 

"Hypertension is the other one … things like high cholesterol is also another big driving one."

While those big risk factors weren't the reason I had a stroke, it's something young people need to consider.

Speaking of others — finding like-minded friends and a community became vital to me. I turned to social media and found JC Pride.

After conversing a few times, it was pretty clear that the two of us were interested in similar things. Specifically, about triumphing outside of stroke. 

He has a business selling jewellery that celebrates resilience, strength and hope. It's called Stroke of Luck.

He also said setting up a business gave him independence.

"I did this because I want an income. I want to just live in a house by myself," he said.

"It's like, something that standard people can have [and] is very achievable was like, 'No, those rights aren't for you, equality isn't for people with disabilities'.

"Recently when I faced a loss of a bit of money I had to go eight months without any support, and I proved to myself that I could do it. I could look out for myself. I can live again."

I also found a community through an online group called Genyus. 

It was set up by Melbourne-based young stroke survivor Caleb Rixon and we meet every week, frequently on a late Friday afternoon.

The group is a safe space for people to talk about their challenges and their wins. 

It's provided me with a chance to talk about things I wouldn't with my therapists or even my parents. 

It's been a lifeline during my recovery; people who are going through similar challenges as myself and who I trust won't judge me.

It's also proof and a reminder that there is life beyond a stroke.

It was a world-shattering experience but even though something is broken doesn't mean the pieces can't be put back into something more beautiful.

This content was produced for the ABC’s International Day of People with Disability coverage.