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'I don't want to spend next 60 years of my life in agony - I want the right to end this pain'

People like me 'shouldn't be made to feel like a criminal'

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Young mum-of-two Evie Nevin (33) battles chronic pain on a daily basis

Young mum-of-two Evie Nevin (33) battles chronic pain on a daily basis

Young mum-of-two Evie Nevin (33) battles chronic pain on a daily basis

A young mother is calling for assisted suicide to be decriminalised so that she can choose to avoid living in pain for the next 60 years.

Evie Nevin (33), a mum-of-two who lives in west Cork, was diagnosed with Ehlers-Danlos syndrome when she was 26.

The rare condition causes chronic pain on a daily basis and before her diagnosis, Ms Nevin said she was just "existing, rather than living".

Ms Nevin said she is now campaigning in favour of a new bill that would decriminalise assisted suicide.

She said that she would like to have the choice to die at home if the pain from her condition becomes too much in the future.

"Something that I've said to my husband is the thought of dealing with this for another 60 years is not what I ever imagined my life to be," she said.

"I would like to be able to die with dignity and not feel like a criminal if I do decide to go down that route.

"There are days when my pain is very bad, it does severely affect my mental health. I've felt suicidal."

At the moment, those living with unbearable pain who choose to die with dignity must either travel abroad to a country such as Switzerland or risk having their friends or family prosecuted if they help them.

The mother of two children, who have also been diagnosed with a similar syndrome, said that she will always be in pain.

"Pain is never going to be 100pc controlled.

"I will build up a tolerance to the next round of meds that they give me, and eventually I will run out of things to try.

"I do not want to spend the next 60 years, or however long I live, in pain every single day.

"I don't want to get to the point where my quality of life is zero."

Ms Nevin said she always knew there was something wrong with her, but a lack of expertise about Ehlers-Danlos syndrome here left her undiagnosed for most of her life.

Bittersweet

In a former job as a journalist, she interviewed a woman with the same condition who suggested that Ms Nevin go to see a specialist.

Once she was diagnosed, she realised that there is very little help or support for people in Ireland with Ehlers-Danlos.

"It was kind of a bittersweet diagnosis," Ms Nevin said. "I finally knew what was wrong with me, and then I came to the realisation it's genetic, incurable and there is no one in the country to look after patients.

"It was almost like going on this really long hike, before coming to this massive mountain."

She has since had to go abroad at great personal expense for treatment.

Ms Nevin has been waiting since June 2017 to see a pain specialist.

She was strongly involved in the 2018 campaign to repeal the Eighth Amendment, but said she was dismissed when she tried to talk about death with dignity afterwards.

Ms Nevin said she feels Ireland is now ready to have a conversation about assisted suicide, and she credits campaigners like Vicky Phelan for helping to change attitudes.

"I'm all about choice and giving people the most compassionate care possible," she said.

Ms Nevin added that the decriminalisation of assisted suicide should not mean that there would be a drop in standards for end of life care.

"Things like palliative care have to be at a very high standard," she said.

"Every single option should be available to people.

"If assisted suicide is brought in, that does not mean the standard of palliative care can drop.

"I'm not saying that this is an option for everyone.

"I just want people to be able to make those decisions here at home with their friends and family, not having to go abroad like we did with women before the Eighth was repealed.

"Sending them off, having no compassion and having stigma around it. It's a valid choice for a lot of people."

The Death with Dignity Bill, which was introduced in the Dáil last week, would decriminalise assisted suicide for people with terminal illnesses in specific circumstances.

Ms Nevin is not living with a terminal illness, but she said she believes assisted suicide should be available for those living in intense pain when no other treatment is available.

She said she believed that people like her sharing their own stories could help change people's minds.

Story

"It's always down to when people share their personal story," the mum said.

"It often seems to be the only way to change society and shift attitudes across the country.

"I think we need to have an open and constructive conversation.

"Why would you leave somebody in pain, if all other treatment had been exhausted?"

This week, Leo Varadkar suggested that the issue could be considered by a citizens' assembly.

Ms Nevin said that while citizens' assemblies had worked in the past, she was against anything that would unnecessarily delay dealing with the issue.