A chronically ill woman is terrified to leave her home in case she catches COVID-19 because people aren't wearing masks.
Olivia*, who wished to remain anonymous, suffers from several chronic illnesses including chronic fatigue, fibromyalgia, endometriosis, anxiety and depression.
Because of her illnesses, the 42-year-old Kāpiti local is in agony every day. Catching COVID-19 could leave her bed-ridden for months - something that's not an option for the single mum.
"For some people, COVID is a really dangerous illness. Even if it doesn't kill us, for people like me with fibromyalgia we don't need to get sicker than what we are because it's already hard enough."
But now even small joys like a weekly trip to the local op-shop have been taken away as the loosening of mask rules shrinks her already small world.
Before the changes, the visit was her one small shred of normality before she went back to confining herself in her home.
But despite masks still being required in retail stores, she said people aren't bothering any more and it's left her and her son trapped in her home, isolated and struggling mentally.
"I am a single parent because my son's father isn't around so there's nobody to look after him if I get sick. So he hasn't been at school since the start of the year because I can't risk him bringing COVID to me and then getting sicker than I already am," she said.
Olivia said the mask changes also seemed to spark a distinct shift in attitudes towards the virus. During the pandemic she felt cared for, everyone was isolating and wearing masks to help protect the vulnerable. But now Olivia feels like no one cares if she lives or dies.
"It seems like there's a collective trauma and people are just over it... they just don't seem to care anymore. I've been told by somebody, 'It doesn't matter anymore, you will probably be fine and nobody is wearing masks anymore'."
But the assumption that people will "probably be fine" isn't one Olivia has the privilege of making.
"[COVID-19] has really brought home how I've always felt, which is once you're chronically ill and you're not working and making a wage, you're not worthy - and it really feels like that is obvious now.
"I am just collateral damage and who cares if I die because people want to go to the pub or want to go to a concert."
People with chronic fatigue are particularly vulnerable to illnesses including COVID-19. Catching the virus could cause her symptoms to flare up which for Olivia, who is already in severe pain every day of her life, would be devastating.
'We've been absolutely abandoned'
As restrictions lift, vulnerable people have been left to get sick, die or isolate themselves completely, Olivia told Newshub.
"We've been absolutely abandoned… I've got nothing and I am so isolated and so alone. My mental health is just getting worse and when I get upset about it, I get dismissed as a crazy person.
"I don't know what to do with this anger and resentment because people just say, 'We care about you' but how about they just wear a mask? That shows they care enough to try to protect me, so I can go to an op-shop and get out of the house."
She said vulnerable and disabled people can't just be locked in their houses so everyone else gets to go about their lives.
"The small things do matter and people are really making it hard for vulnerable people who do have a right to be in this world. And not just them but their children and their families.
"We did what we were supposed to do to help protect everyone and I am tired of this too, I am really tired."
Olivia has a simple message for people.
"We are all still each other's responsibilities and it's just been put on us who are disabled and we still need help. We are working very hard every day to keep ourselves safe so please just continue to look after us."
'Significant added health, economic and social burden'
Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) expert and emeritus professor of biology Warren Tate told Newshub the easing of elimination strategies and restrictions means vulnerable patients like Olivia are now highly exposed.
"A laissez-faire attitude to mask-wearing now, widespread in the community, has added significantly to the risk," he said.
"As a consequence, ME/CFS patients have not been spared from infections, and there is a heightened anxiety among those still trying to protect themselves."
Professor Tate said while people with fibromyalgia and chronic fatigue aren't inherently more at risk from the virus itself, they are at significant risk of it causing their prior conditions to flare up, often with debilitating consequences.
"A UK study has shown ME/CFS patients also have the same high incidence of a serious worsening of their existing disease following an initial COVID infection that… destroys whatever normality they had in their lives.
"This is a form of the debilitating Long COVID but affects ME/CFS patients at a much higher incidence than the healthy population."
Professor Tate said another issue facing the community is bad reactions to vaccines. He stressed the vaccine is safe and effective but for people with chronic fatigue, any vaccine can cause issues.
"There are disturbing issues for these vulnerable groups. It has been shown there is a high risk of severe adverse reactions from vaccination. So many ME/CFS patients are unvaccinated or only partially vaccinated as a result of a severe reaction so they lack the protection against serious illness that the vaccine can provide."
He said requiring masks in schools would make a huge difference and help protect vulnerable groups.
"The failure to recognise the importance of this [masks] will leave vulnerable groups like ME/CFS and fibromyalgia and now Long COVID a forgotten people. It will leave society with a significant added health, economic and social burden."
Endometriosis is a condition where tissue similar to the uterus' lining grows outside the uterus. It can cause extreme pain, vomiting, heavy bleeding and lead to infertility.
Meanwhile, fibromyalgia is a disorder characterized by widespread musculoskeletal pain. It is often accompanied by fatigue, sleep, memory and mood issues. Chronic fatigue, or ME/CFS, is a complex illness that causes extreme fatigue, sleep abnormalities and pain.
