Green MP Tamatha Paul has revealed she is living with invisible disabilities. Photo / Mark Mitchell
Tamatha Paul (Ngāti Awa, Waikato Tainui) is one of Parliament’s most disabled MPs. She tells Varsha Anjali what it’s like living with invisible disabilities while working as a public figure.
Tamatha Paul was 12 when she started to believe something shocking.
“[That] I was going to die young.”
She had just received the diagnoses that distorted her whole world.
She saw herself differently. She saw her life differently. She saw the years she had left to live differently. And it was terrifying.
Paul, the Green Party MP for Wellington Central, was told she had systemic lupus erythematosus (lupus SLE) and rheumatoid arthritis at the age most girls start their periods.
Her mum went straight to Google to learn more about the conditions. Paul avoided looking. She’s glad she did. It was a grim assortment of material - the kind that stains. Mostly women were affected. Some died young. Some died at 40.
Lupus, which didn’t cause big problems for Paul until she was 22 or 23, means her body is now her enemy. It attacks itself. Around 1 in 900 people in Aotearoa have the autoimmune disease and they all experience it differently. Most of the time Paul is “full beans energy”. Other days she feels like roadkill.
Rheumatoid arthritis is also a chronic autoimmune disease. It makes the joints scream. They’re often stiffen, inflamed and all swollen up. Around 40,000 people across the motu live with this pain.
Paul is now 28. She’s lived with her diagnoses longer than she hasn’t.
In 2023, she became the first Māori MP to represent her constituency and the youngest MP for the Greens.
One year later, she also started suffering from heart problems.
She couldn’t work out why she was so dizzy and so tired at first. She told herself it was normal; she was probably just nervous because it was her first year as an MP. Some nights at Parliament she finished at 10pm. Some nights she finished at midnight. Those nights didn’t help.
During an iron infusion appointment last year, doctors decided to give Paul a 24-hour heart monitor. Instead of throbbing steadily inside her chest, Paul’s heartbeats were irregular one-third of the time. Either a double beat, a triple beat, or it missed a beat completely.
She wasn’t nervous. She was unwell.
“You know when you get a fright, or when you’re really, really nervous about something, and you can feel your heart pounding? It was like that all the time,” says Paul.
It’s funny, she says, because no one could tell.
“If you were outside looking in, you wouldn’t even know. But I was just exhausted all the time.”
Doctors put Paul on heart medication. They also told her she urgently needed a cardiac ablation, a common procedure “where they go in and burn the part of the heart that is malfunctioning”, says Paul. It’s taken a year for Paul to get that procedure, which happened on October 16.
That was also the day Paul decided to go public about her own health struggles for the first time.
“I am disabled,” her Instagram post began. At the time she wrote those words, thousands of public sector workers across Aotearoa, including nurses and doctors, were preparing for a mega strike.
The post was met with a wave of support from followers, fellow politicians and others struggling with similar health conditions.
Paul says she’s talking about her disabilities now because it is important for her to shed light on the state of the healthcare system.
Her cardiologist believes the heart problem is now fixed. Paul, immensely grateful for the care, points out that it still took a long time to get here.
She says she earns a decent salary. She can afford private healthcare.
“If even someone in a position of such privilege as myself is having a hard time in the health system, what does that say for the people working in the health system? And what does that say for ordinary, regular people who have to navigate that system, or wait in that system?” she says.
Stress is bad for everyone. But stress is horrendous for people with autoimmune diseases. About once a year, Paul feels like she’s been hit by a truck.
These are big flare-ups: “It’s like burnout times a thousand,” explains Paul. “You just want to lie in bed in the dark, just sleeping for days.”
When she was younger, she would try to resist, telling herself that she’s “normal” and she could “handle it”. Now she knows she can’t fight the flare-ups. Now she knows all the things she needs. She rests to bounce back stronger.
“I actually think I’m kind of lucky in that respect, because I think people who don’t have health issues, they don’t take those things seriously, and they just burn themselves to the ground ... you see it all the time with politicians who just go out in a ball of flames.”
Paul says the Speaker of the House is the most important person when it comes to an MP’s health and wellbeing in Parliament.
“For me, Gerry [Brownlee] has been pretty amazing”.
Paul explains that when she first became an MP, Brownlee let her have one leave night per sitting block, the a planned period where MPs gather in the debating chamber, just so she could get a good sleep.
“Which means a lot. You go through three-week sitting blocks, and it does begin to wear you down. Just the constant late nights. Having him support me has been huge.”
The woman who advocates for thousands as an MP - something most people never come close to achieving - is the same woman who believed she would die young.
“That tells you ... why I’ve done all the things I’ve been able to do in my short life. Because I’ve thought I have to do it now. Because I’m not going to get a chance like everybody else. Because I’m going to die young.”
As she’s got older though, she learned that everyone’s condition is different. And anybody could die at any age.
“I’ve got information that helps me to know what is the best way to live my life.
“But at the same time ... life is just life. Anything could happen to anybody. Any day.”
Fun looks like long walks with her dogs or a big sleep-in. Fun also looks like DJing with electronic producer Messie at Wellington bar San Fran in September.
“I can’t really drink ... a hangover for me will last me months ... I live a nanny lifestyle, but still have fun,” Paul says.
Following the October Instagram post, Arthritis New Zealand approached Paul. She will meet with young people who have autoimmune conditions this summer in Waikanae.
Because Paul knows exactly how they feel. Wondering if they will live a good life. Wondering how long they live for. Wondering if they will be able to have kids and do everything they want to do.
“And I would say to them: you can be whatever you want to be.”
She chokes up. Eyes wet.
“Don’t let anyone tell you what you can and can’t do. You’re just as worthy of love and kindness and care as everybody else and we can do anything that we want to do or set our minds to.
“Don’t believe when you’re that age, and you have these things in front of you, you think, ‘oh, I’m gonna die young, and I can’t do anything, and no one’s ever gonna want me, or want to work with me, or want to be with me’. It’s not true.
“You can live a big, beautiful life. And you can have many different chapters in your life. And you can lead the way for people who come next as well.”
Varsha Anjali is a journalist in the lifestyle team at the Herald. Based in Auckland, she covers travel, culture and more.