Life with Long Covid - what it's really like

Living with Long Covid can be exhausting, painful and lonely, and most people do not know when their symptoms will improve.

More than 2000 people in New Zealand have registered as having Long Covid, while another 1200 have started the process to join the official registry.

It was set up by University of Auckland researchers to get a better understanding of how many people in New Zealand have the disease.

Those academics think around 10 to 20 percent of people infected by Covid-19 may go on to develop Long Covid, which means up to 200,000 could be suffering.

Every person with Long Covid has a story - here are a few to show what life with the disease can be like.

Rufial Willow-Blake Lemmens

Rufial Willow-Blake Lemmens feels like she has missed every first with her children because Long Covid has her in bed 18 hours a day.

"Those moments are gone forever. That grief and guilt of always telling them to leave me to rest or that I'm not coming to watch them swim."

Just a year ago, 37 year-old Rufial was a busy mum of two with a baby on the way. She was active, climbing mountains and regularly hosting a church group.

Now, after catching Covid-19 in late 2022, she battles daily with extreme fatigue and often loses the ability to use her legs, arms and torso.

"I don't have a life... I can't take a bath or go for a walk. I can't even listen to music or watch TV, the stimulus is too much and it tires me out. I just desperately want to do some baking, some sewing, or take my baby for a walk in the pram. I've never done that."

Rufial said it took months to access support through Work and Income and Disability Support Services.

She was finally approved to hire a nanny to help with childcare in September. Rufial also has funding for a support person to shower and feed her each day.

"I know I'm lucky. I know that the majority of people with Long Covid don't actually get support. I think the only reason I get it is because I have a baby - I think that's the only reason I've been approved".

Rufial wished those with Long Covid could access disability support faster and that there could be more emotional support for people like her that are isolated.

Dean Hohaia

Dean Hohaia said having Long Covid has stripped the enjoyment out of life and has made him feel numb.

"I'm numb all the time. I don't feel happy, I don't feel sad, I don't laugh, I don't cry - I'm numb."

The 61-year-old has been suffering since November 2022. He's exhausted, has difficulty breathing and battles with brain fog as well as the constant buzzing of tinnitus.

"It's hard for people to understand. You try and do stuff and then you end up crashing for two or three days, sometimes longer, because you've done a wee bit of work around the house or something's stressed you out."

Dean used to enjoy going out and watching live sport - particularly Otago and Highlanders rugby games - but now he is too sick to go and is worried he will get Covid-19 again.

"You lose your self-confidence. I don't even want to go out at times because I get physically drained. It gets into your head and you can't relax. There are some whānau functions that I haven't gone to because I couldn't handle the noise. You get tired and want to sit down somewhere and you've got everyone else running around having fun".

Dean is on a sickness benefit because his underlying health issues and Long Covid diagnosis mean he cannot work.

He has a good doctor and sees a counsellor regularly, but he wished there was more financial support available and a place for people with Long Covid to talk in person.

Hannah Vogels

Hannah Vogels' life was once packed and busy. The 25-year-old was working, studying and enjoying spending time with her friends.

Then, in February 2022, she caught Covid-19, which soon developed into Long Covid.

"I already had ME/CFS (chronic fatigue syndrome) so I was aware I could get Long Covid. Then the fatigue from Covid-19 hit me hard and never went away."

Hannah deals with pain, dizziness, migraines and exhaustion. She has also developed postural orthostatic tachycardia syndrome (POTS), which affects the heart.

"I get nerve pain in my legs which feels like they're are burning. I can lose sensation in my hands and legs sometimes".

Hannah was forced to move back home with her family and has been unable to work since.

She said accessing a disability benefit took a lot of time and effort for someone struggling with intense exhaustion.

"I don't feel well-supported. I feel like I'm having to do all the work. I should be able to focus on turning up to my appointments, taking medication and following my treatment plan. But I am spending my time researching, advocating for myself and pushing paperwork".

Karl Hewlett

Long Covid has taken away Karl Hewlett's job and his home.

The 55-year-old developed symptoms in 2020, lost his well-paying job in IT and went on a sickness benefit.

Over the last three years Karl has had a heart murmur, a collapsed lung, chronic diarrhoea, migraines, exhaustion and intense brain fog.

"I have used Wellington buses for years, but when I was really sick it got to the point where my girlfriend wouldn't let me take the bus. On a couple of occasions I had to ring her to come and find me because I was lost."

By September 2021 Karl could no longer afford to live in his rental home, so he and his partner sold everything and bought a house bus. But that meant he didn't have anywhere permanent for his son to stay.

"It hurts. I feel like I'm failing him. I feel like he needs his father."

Karl has struggled to get a diagnosis for Long Covid, a common problem due to the wide range of symptoms the disease can cause.

"Going through the health service and getting gaslit like that is one of the very worst parts of it. I went there for help, and I got brushed off and insulted by somebody who didn't take the time to have a look.".

Karl wants a Long Covid clinic set up to streamline healthcare for people like him and he wants access to government financial support to improve.

Long Covid Support Aotearoa

Long Covid Support Aotearoa connected RNZ with Rufial, Dean, Hannah and Karl.

It is a support group that began as a Facebook page in 2020 for people looking for answers after they caught Covid-19 and did not get better.

It currently has around 2300 members who share resources, research and advice.