Saying what no one wants to hear.

Jenene Crossan is a business owner who contracted Covid-19 in March 2020 whilst working offshore. When she didn’t recover, Jenene became determined to find out ‘why’ — which resulted in utilising her business skills and voice to establish the Long Covid Support Aotearoa network. In addition, she is the co-founder and investigator on the University of Auckland Long Covid Registry study which seeks to understand the economic impact and social burden of Long Covid on Aotearoa New Zealand.

— — — –

Championing a cause that’s fallen ‘out of favour’ with the mainstream is a thankless and often demoralising task. The collective desire to ‘move on from Covid’ means people don’t click to read, they swiftly move on and refuse to participate. I guess it’s human nature, when we want to be done with something, we just pretend it doesn’t exist until it acts accordingly.

The problem with that approach, of course, is that the virus doesn’t care if you’re done with it or not. It doesn’t care that you feel like that was 2022’s problem and it’s already taken enough from you. Your business, your relationships, your finances — they all suffered and you’ve paid enough, thank you very much. And that’s understandable, nobody got out of Covid better off — it sucked for everyone, but some more than others. It is easy to forget (or perhaps you’re lucky enough not to realise), that for 1 in 10 people contracting Covid, they won’t be able to just watch Netflix, chill and then get back on with their life. But it’s ‘just a cold’, right?

For the unfortunate few who fall into this trouble zone, it dawns on them slowly and then all at once that life has now changed. At first it feels like it’s taking forever to go away, much longer than anyone else around them who contracted it at the same time. Maybe you’ll put it down to feeling a bit rundown to begin with, a bit too stretched and stressed, or possibly even something else has flared (but maybe you’ve not thought to associate or connect it together). I mean, how could your period possibly be impacted by Covid? The persistent head-ache, the waking up in the morning feeling hungover without the fun night out attached to it, the joints that suddenly remind you that you’re getting older. Those ears just won’t stop ringing, huh? And what about the little faint spells you have as you stand up too quickly. Don’t even get me started on walking up the stairs, since when did that become such an onerous task?

And then over time, roughly about three to four months later, many are forced to face the reality: they’re not getting any better, in fact, they’re getting worse. They can’t work, eat properly, exercise, look after the kids, do basic housework — in fact, even swallowing and breathing is challenging. Keeping eyes open for more than a few hours? Not likely. Though sleep is not refreshing and often hard to come by.

Now that experience isn’t for everyone. Actually, that’s just the lucky ones — the ones who happen to have awareness of Long Covid or a diagnosis from an informed and educated GP (who took it upon themselves to learn more as the number of patients coming in with this ailment increased, whilst the necessary information to help them help others was not forthcoming from the Ministry of Health).

Some struggle on for a very long time before they somehow work out that they have Long Covid, and now spend half of their time convincing others that what they have is real and the other half gas lighting themselves into believing it’s not (the things we’ll do to feel better include trying reverse psychology on ourselves). Some go see a therapist, hoping they can talk their way out of this. Others try veganism, elimination diets, vitamin C infusions, a raft of expensive supplements, anything they can get their hands on (and afford) that may help them get out of this spiral.

The truly unfortunate ones are those who didn’t know that this was even a thing. Or worse, don’t believe that it exists. Or even worse again, if that were possible, they live with people who believe it’s a hoax, a conspiracy, a mere reaction to a vaccine. Ah, if I had a dollar for every person who has said, “I would love to know how many of these people were vaccinated”. I’d probably be able to fund the badly needed biomedical research that we need in Aotearoa on Long Covid.

Even if I humour that lot for a moment. Let’s say for argument’s sake that they’re right, that Long Covid was created by the vaccine. Setting the obvious flaw in that argument aside (it is somewhat required that you must have had Covid in order to suffer from the long version of it), what does it matter? Nobody really knows how the virus was created (to be honest, nor do I care) and we still treat people who are very sick from it. You wouldn’t expect someone to turn up to hospital coughing up a lung and be turned away, “well, you got that from having a vaccine — that’s your fault, innit?” No, we’d have empathy and act like compassionate human beings and help each other get well again.

Let me say that louder for the people in the back (otherwise known as the 3,498 people I have blocked on Facebook thus far who have poured abuse onto our support group), that your lack of compassion is making this thing you call the “plandemic” worse. Every time you tell someone that it’s not real, they get further away from the help they need. They get a little bit sicker and a little bit more helpless. In the support group that I co-founded, where thousands of people turn up and tell us the desperation and hopelessness they feel daily and mourn for the life that feels robbed from them, there is a distinct air of ‘living on the edge’.

Imagine not being able to work any longer, that your boss won’t hold your job open, you’ve used all your sick days, you can’t afford to pay rent, or go see the doctor. You don’t have enough energy to shower yourself properly; when you stand up, you fall down. You’re expected to somehow earn enough money to ensure that you can feed the kids and get them to school with shoes on and lunch in their bags. There is no benefit that will be extended to you, Long Covid has not been termed a disability as yet. That’s not because it’s not ‘bad enough’ (it absolutely is), it’s because the Ministry of Health has not issued the information required to the disability commissioner who can make an informed decision. But why haven’t they done that? We’ll go back to the beginning of this article/rant; because Covid is not popular any longer. It does not garner clicks, it is a political hot potato, voters aren’t interested, we’re all collectively bored.

This leaves thousands upon thousands of people in despair, stranded and going backwards further every single day. They are the reason you are waiting so long for things to turn up, to get fixed, to be served to you. Our essential workers are being decimated by this disease — the ones who have borne the brunt of the covid burden, every step of the way. And instead of helping them up, we gas light and tell them that they’re dole bludgers. We make statements that when we get in power, we’ll make sure beneficiaries are kept in line, the purse pulled tighter and force them back to work. Next time you see a ‘help wanted’ sign, I beg of you to shift any preconceived ideas you may have and instead get curious. Everyone knows someone now with Long Covid and if you don’t, maybe you’re actually part of the problem. Maybe you’ve not been listening, or perhaps you simply thought the person who’s ‘always sick and off work’ is just dramatic, an attention seeker….or weak. This is a sickness of the weak, eh? It couldn’t possibly happen to you, you obviously look after your immune system.

News flash: nobody gets to fully control that. Oh yes, I agree, there are many things you can do to support your health — but mostly if you are privileged. The cost to stay well — fresh food, clean drinking water, access to fast health care, supplements, advice, support, specialists. If you have insurance or means, you’ll be better off — you may not get better faster, but you’ll feel less hopeless and once you’ve spent time with the “others” there’s a quick realisation of the pecking order that exists. Comparison is undoubtedly the thief of joy, and never has that been more true than in a Long Covid support group. Just when you think that you’ve got it tough, you realise that there are people who have it much tougher again.

I can say for certain that immunity isn’t something you can control. As a candidate of one of the University studies currently underway, I know for a biological FACT that my immune system was sent haywire as a result of Covid. My bloods were drawn pre vaccination — in case you were wondering or quick to throw down your ‘beliefs’. They have been able to prove that the Long Covid cohort (including me) have seen a genome level impact from Covid. Sometime in the next year or so a peer reviewed paper will come to light and we’ll all be able to learn from this extraordinary work they are doing. But in the meantime, scientists (like University of Auckland’s Dr Anna Brooks) are fighting for scraps to be able to afford to continue their medical studies — as it is virtually impossible to get the funding they need to keep going.

Nobody wants to touch Covid. You see, it doesn’t sell anymore.

It has been 46 months since I first contracted Covid-19, since I found myself the only person people around me ever knew to have had the virus. That seems like a lifetime ago now, my life has vastly changed since then. My health has become a game of snakes and ladders, just when I think I’m winning, I slide back down the slippery reptile and back into the challenge of head, heart and health. This December I embark on more surgery, inflammatory related, it continues.

Sometimes I like to pretend it didn’t happen to me. Sometimes I tell myself that it’s all in my head and I allow a moment to consider that maybe the anti-vaxxers are right, that perhaps it’s just all a big hoax. And then I look at the data, visit the support group, review our lived experience blogs, read articles like Marc Daalder’s, and then I stand up straight. My job is to be strong, to hold the line for the sake of those who can’t.

I see what nobody else wants to and I say what nobody wants to hear: we need you to stop making assumptions based on what is the easiest path for your life.

This isn’t going away.

No matter how much you want it to, turning your back is making it worse. The impact on the economy will continue, unless this is addressed immediately. How we got to this place is no longer relevant. The sooner you help us take steps to support the 10%, the sooner we’ll get you back to that uninterrupted life you desperately want back.

— –

LINKS:

• Think you might have Long Covid? Take our health quiz.
• Donate here to support the group. This is the only long covid pathway and mechanism that exists to support patients (which has been created by patients).
• Click here to read about The Registry project.
• More information can be found on the LCSA website