In 2015, Work and Income drove me into ICU with threats of sanctions.

Later, they realised I was getting the letters by accident, but the health impacts still plague me to today.

This is an edited copy of a recent casual personal essay I posted on Reddit. I am sharing it to Substack to make it easier to share around. I was then asked by RNZ for an interview, and quotes from this have been used for an article they published today.

I wasn’t very well in 2015. I was acutely unwell with a hormonal mood disorder and C-PTSD, and couldn't get through a day without a panic attack or intense flashbacks. But WINZ put me on a list by accident for youth jobseekers to attend work-readiness seminars. Then, they sent me a letter telling me I had to go or I'd be cut off. I live in Dunedin, so the Dunedin WINZ office would print the letter, put it in the mail, and that letter would travel all the way up to a sorting centre in Wellington only to travel all the way back to me in Dunedin. I got this letter I'd say like 4x, and each time it came several days after the seminar had already happened. Then I'd have to contact WINZ in a (literal) panic, begging them not to cut me off.

I went through several months of this before one day, I got the letter again and just broke. I will save the explicit triggers, but I ended up in the ICU. I survived, obvs, hurray! Hated it at the time but so grateful for it now. Nearly got transferred to Auckland to prep for an organ transplant but I bounced back. Finally, the next letter I received about this seminar came before it occurred. I attended. I burst into panicked tears somewhere around the point they were explaining to us what a CV was. Two staff members sat with me out in the office, somewhere in there I said something about how I thought I'd been told I didn't have jobseeking obligations and didn't know how I was meant to work like this, and they looked at my file and lo and behold I'd ended up on the list by accident. I didn't have any work-readiness obligations. All that stress and fear of becoming homeless I went through? Absolutely unwarranted, and unnecessary. All that extra cost on the health system? Could have been avoided.

The stress, and the medical results of that stress on top of quite severe mental illness, finally got to me and a month later I developed glandular fever. I never recovered. I developed ME/CFS from that - emotional stress takes quite a toll on your energy levels and doesn't really help you cope with illness. I managed to study, kind of part time, and slowly work my baseline up to a good place, and finally got well enough to have a child and was absolutely on top of the world thinking this is it, I'm ready for the rest of my life now, I'm gonna go do everything I've been dreaming of with this cool kid at my side - only to later develop Long Covid. Of course, I had a predisposition for it (it's basically a severe ME/CFS relapse in my case), but like most of us I never really expected a massive global pandemic to make me sick again. I'm still sick today. All these things caused a secondary condition, POTS - I'm very heat intolerant, tachycardic and pre-syncope every time I change my posture, I have to take medication to raise my blood volume because it's low enough that it doesn't pump through my body effectively and I get intense blood pooling.

I can pretty confidently say I don't think I would have gotten so sick, and lost so much work capacity, if MSD had allowed me to rest and recover back in 2015. Like who knows what could have happened, but I don't think I'd have become chronically ill the first time for sure.

My mental health is so stable now, I did a lot of counselling and I'm no longer traumatised, and it is just.. monumental. I feel joy nearly every day. I'm so grateful to be alive. I'm so grateful to everyone who helped me stay alive. It is such a gift.

But I still have ME/CFS/LC. I am now finally on Supported Living Payments and do an average of 4 hours a week either in study or in work, just enough to keep afloat and keep my mental health happy while still staying within what I'm medically and legally allowed to do. I'm on SLP because after 9 years, it's really unlikely that I'll magically recover enough to sustain full time work in the next 2 years.

I am so scared about the new MSD traffic light system though.

Somehow, I'm less scared for me than I am for the people around me. I'm very confident I'm meeting my obligations and my only risk is getting assigned a WINZ doctor who doesn't believe post-viral illness exists, which, weird and anti-science but ok.

The thing about being disabled is that when you seek community, it often ends up being people with a similar health and disability profile to you. We tend to (not always) just get each other, y'know? So I have friends who are bedbound, friends who need personal cares 5-10x a day, friends with severe mental illness who can't get through a day without panicking, and everyone's really scared. It isn't just people on Supported Living Payment, a lot of the other disabled people I know are on Jobseekers with a medical exemption. I believe they're probably technically eligible for SLP, but we find a lot of doctors are really reluctant to say you won't get better in 2 years - not because it isn't the truth, but because they want us to have a positive attitude about our illness and they want us to hope we will get better. And even once the GP ticks the "They won't recover in the next 2 years" box, MSD is notoriously bad at actually actioning a transfer onto SLP.

The problem is that most of these disabilities are either permanent and require a lifetime of really active and expensive management, or won't diminish unless someone can rest, sometimes for a number of years.

The system introduced this week has so many policy flaws that I can absolutely see the potential for more cases like mine, more people assigned obligations they literally cannot meet, more people's lives impacted long term.

I would desperately love to work full time. I want financial liberty. I don't want to depend on a safety net my whole life. But I can't find a single thing the state is doing to help me achieve that, in fact, all I can find is state-introduced barriers. If I'm going to get better, I need to be able to keep paying rent without having to work. I need to be able to rest instead of nearly fainting trying to do housework. I need access to occupational therapy.

I think people have this misconception that when you become disabled, you are magically eligible for all of this state support. I was talking about it once recently and someone told me I can't actually be disabled, or I'd have been given a rollator. I write about this a lot in my Masters coursework at the moment, about how Aotearoa has at least 8 different state disability systems each servicing a different demographic of disabled people, depending on cause of disability, each offering a different tier of support. Two disabled people could have exactly the same access needs, but two different causes, and be eligible for totally different support as a result. And weaving this back to welfare, because of these inequities, there are disabled people on Jobseekers, Supported Living Payments and Sole Parent Support who are just systematically under-resourced to take the steps they need to take to actually get better. I'm going to explore this even further in my thesis, when I finally get there, because it's pretty rough on whole whānau.

The government of the day has access to all this information. If a postgrad student with cognitive dysfunction from a fatigue disorder can find it while lying in bed waiting for pain relief to start working, they can. We all know they're out of touch, out of their depth, and probably just don't care.

But such a huge amount of the people on main benefits are sick like I was back in 2015, or maybe in the earlier stages of it, and they deserve the ability to stop and get better and avoid the whole palaver I went through. That others went through too - I have spoken to a small number of people in this sub alone with really similar experiences.

MSD under the last Labour governments still wasn't a nice place, but at least there was a shift away from punishing sick and disabled Kiwis for being sick and disabled. I like to hope we can imagine a better future - and, then, vote for it in the next general election.