'You just want someone to love you': The reality of dating with a terminal illness

  • 19/04/2018

Like many people, Michael Hanly's looking for love. Unlike most people, he has a terminal illness.

He was diagnosed with Huntington's disease last year. While he's not yet showing any symptoms of the neurological disorder, it's something he'll have to discuss with any future partners.

"I guess what I'm trying to do is meet someone who has the maturity and gravitas to understand something like this," he told The Project's Kanoa Lloyd.

"It's not a small conversation, because most people don't know what it is."

Huntington's, an inherited disease that kills brain cells, is caused by a faulty gene. It can cause jerky movements and trouble walking, speaking and swallowing.

Life expectancy is generally about 20 years after the person starts showing symptoms.

Mr Hanly's grandfather, the celebrated Auckland painter Pat, died of the disease in 2004 at the age of 72. He describes him as an amazing, eccentric presence in his own childhood despite his symptoms worsening.

"He was a lovely interesting old man, but by the end of his life not very easy to understand."

He says "of course" he sometimes gets down thinking about his own prognosis, having seen the effects of the disease first-hand.

"You haven't done anything to deserve it and it's just kind of been lumped on you. But you try to just keep positive. It's not affecting me now."

In 2017 researchers announced a scientific breakthrough: they'd fixed a protein defect that causes Huntington's. It's advancements like this that keep Mr Hanly optimistic.

"You can get down about it, but there are things happening all the time and an enormous amount of research going on around the world. It is promising."

One of his goals in life is to eventually have a family of his own - but that will mean some serious conversations with any prospective partners, as he has a 50 percent chance of passing the disease onto his children.

Like anyone else in search of a relationship, his desires are simple.

"You just want someone to love you."