My husband had to become my carer after we had our son. I was diagnosed at 26

Social Democrats vice-chairwoman Evie Nevin on life with a rare genetic condition

Evie Nevin: ‘It was great to finally put a name to what was wrong with me.’ Photograph: Nick Bradshaw

Evie Nevin: ‘It was great to finally put a name to what was wrong with me.’ Photograph: Nick Bradshaw

 

“I was very upfront with Martin when I first met him,” Evie Nevin says as we discuss her husband, Martin Nevin, who is also her carer. “I said, ‘There’s something wrong with me. My doctors are saying I’m depressed. I’m on anti-depressants.’”

It wasn’t until Nevin was 26 that she was diagnosed finally with Ehlers-Danlos syndrome, which affects connective tissue.

“It’s a genetic condition, and I had issues,” explains the Social Democrats’ vice-chairwoman. “Nothing too major my whole life, but it was when I was pregnant with Alex that the symptoms became more prevalent. After he was born I became a person with a disability. My mobility became affected, and it got worse then when pregnant with Olivia, and after she was born.”

Ehlers-Danlos syndrome causes Nevin’s joints to dislocate very easily. “My hips are pretty much out of place all the time. If I’m out of the house for any length of time I’ll need to bring the chair with me.”

She also faints and bruises easily. Coupled with this, she struggles with being upright for any length of time. “It’s almost like being allergic to being upright. When I’m upright my heart rate goes up and my blood pressure drops.”

Diagnosis was bitter-sweet, Nevin says. “In one sense I finally knew what was wrong with me and it wasn’t all in my head. I had been to so many GPs. I had changed GP so many times because I was told I was depressed, I was anxious, it was all in my head. They wouldn’t listen to me at all.

With Martin at home I’ve been able to get that bit of myself back as well, and my passion for making things better

“It was great to finally put a name to what was wrong with me... because I was so tired all the time. It was really, really difficult, and there were some very dark times. Without my husband, and without my dad, I don’t know if I’d have made it through.

“I felt very useless for a long time. We had to make the decision that my husband had to be my full-time carer. It’s something that we didn’t want to do but we had to do.”

In the beginning Nevin found the transition to being cared for “infantalising”.

“I felt like I’d lost my independence and this is kind of my life now. I was resigned to the fact I was never going to be able to do anything significant with my life, but with Martin at home I’ve been able to get that bit of myself back as well, and my passion for making things better,” she says, referring to her involvement in politics.

Nevin admits that she wouldn’t cope with taking care of their children, both of whom also have Ehlers-Danlos syndrome, without Martin but says it’s very difficult trying to manage financially, because “you’re living week to week”.

Being a cared-for person “can be very isolating and it can be very lonely. People go on about how toxic social media can be – that’s a lifeline for me. A lot of the time that’s the way I socialise,” she says. “If you want to maintain that relationship with someone who is being cared for, try and include them in things that they are able to do. Keep reaching out to them, keep in touch. If you know someone who’s living with chronic pain please reach out to them, because sometimes the thought of another year of pain can be too much for people.”

In spite of the challenges Nevin remains positive. “I think everything I’ve been through has made me a better person. If I hadn’t been through all this I wouldn’t be where I am today.”

Lucy O’Donovan and son Jeremiah: 'He does everything for me'

Lucy and Jeremiah O’Donovan: ‘I have an alarm at the side of the bed and if I want him at night, I press that and he comes running.’
Lucy and Jeremiah O’Donovan: ‘I have an alarm at the side of the bed and if I want him at night, I press that and he comes running.’

“I’m very lucky that I have Jeremiah,” says Lucy O’Donovan about her son, who is also her carer.

The 86-year-old from Cork has type-1 diabetes and is blind. She had a triple bypass five years ago and last year had a large cyst removed from her ovary. Two weeks after the surgery to remove the cyst she fractured her hip and had to have it replaced. “I’m not able to get around that well at all,” O’Donovan explains. “I use a walker and a wheelchair.”

Jeremiah, who won the Cork Netwatch carer of the year award in 2019, has cared for his mother since his father died, three years ago. He also cares for his brother, who suffers with depression. “Jeremiah gets up in the morning and he’d get me up. He wouldn’t dress me,” O’Donovan explains. “I have the home help coming in to dress me. He’d light the fire and get my breakfast.”

Before the lockdown due to the Covid-19 pandemic, Lucy was going to Turner’s Cross Centre twice a week. It was something she really enjoyed.

“They have singing and dancing and quizzes . You get lovely tea and scones at 11 and a beautiful four-course lunch at one o’clock.”

It was a vital outlet in an otherwise restricted week which became more restricted over the past few months. “It’s a bit lonely. The telly is on all day but I can’t identify anything.”

O’Donovan, thankfully, doesn’t struggle with the mother-son relationship role reversal, saying that she has no problem with it. “I’m very lucky in one sense,” she says as she explains the care that her son takes of her. As well as bringing his mother to all her appointments and administering her medications, Jeremiah “does all the shopping and the cooking and the washing and the cleaning and the ironing”.

“He does everything,” says O’Donovan.

And his care doesn’t stop at bedtime. “I have an alarm at the side of the bed and if I want him at night, I press that and he comes running. If I want to go to the bathroom or anything during the night.”

I’ve said it time and time again, didn’t she look after me long enough

Jeremiah, like his mother, also has type-1 diabetes and recently himself struggled with ill-health. “I’d a slight setback last year myself,” he explains. “I had to get a stent in. I’d a 95 per cent blockage in the main artery. I was out of action only for about a week, that’s all.”

Although Jeremiah rarely gets a break, he insists “there are others a lot worse off” than him. “The way I look at it, and I’ve said it time and time again, didn’t she look after me long enough and thank God I’m able to do it now.

“When she was looking after us there was no such thing as a washing machine or dryers when we were small babies. When you think of the hard work she had to do for us. When you love someone and they love you too, it’s what you do”.

O’Donovan has much of her son’s pragmatic and positive attitude to life. She refuses to let her various medical conditions and physical restrictions get her down. “I’m getting on with life,” she says. “I’m quite contented.”

Do you care?

Family Carers Ireland is a national charity supporting Ireland’s 355,000 carers (contact 1800-240724 or familycarers.ie). “Caring is something that comes to all of us at some point in our lives. We will either provide or require care. It is a societal issue that we cannot continue to ignore”, says Catherine Cox, head of communications and carer engagement.

“We want to see family carers truly recognised for their contribution of €10 billion per year to our economy and health services. We want them supported through vital services in their community when they need them. We need to move away from resource-led discretionary supports to need-led services in the community and in the home.”

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