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SocietyAugust 17, 2022

People with long Covid get strength from growing Facebook group


Joining with others in a similar situation helps ease the isolation and confusion surrounding this mysterious disease.

NB: This article was written by someone whose cognitive function has been  impacted by Covid-19. It was worked on in one-hour chunks over several weeks as brain clarity, pain and energy levels allowed… often from bed. 

This pandemic has been brutal, right? It upended my family’s life in a multitude of ways, but throughout the first two years whenever I felt myself freaking out about job losses, solo parenting in lockdown, or the MIQ roulette my overseas husband was playing, I’d remind myself of all the people who’d succumbed to the virus and the loved ones left behind. “At least I have my health” became an oft-repeated mantra for the moments when it all felt too much. Then in March, Covid-bloody-19 descended upon our household and hit me hard. Unfortunately, I’ve never recovered.

Before the virus I was like an Energizer Bunny on uppers. I swam almost 4km per week, had Nerf wars with my kids, loved parties and was the undisputed Boggle champion of the universe. But a few months after infection, the flu-like symptoms remained, a shower would leave me wheezing, my heart hammering in my chest. I found my delightfully rambunctious children too overwhelming to handle and conversing was both mentally draining and painful for my inflamed voice box.

But by far the worst thing was the cognitive impairment. The effort to focus my eyeballs made my brain hurt (like wearing the wrong prescription glasses) and words on the page or screen may as well have been in a foreign language. Always the Pollyanna, I kept assuming that next week I’d get better, but that never happened. I felt trapped inside my broken brain and body.

My sister-in-law who works with brain injuries and is developing a Long Covid rehabilitation programme, sent me a link to a local Facebook support group. I was sceptical at first, but felt relief from my very first glimpse of the banner image that said “You Are Not Alone”.  

A quick scroll through the page showed stacks of strangers with previously active and fulfilling lives who 12-weeks post Covid found themselves horribly sick and often misunderstood by whānau, employers and even medical experts. They are people of all ages and backgrounds across the motu, whose lives have been sidelined by a dizzying array of symptoms (129 in total), ranging from joint pain to gut issues, migraines to strokes.

I had found my tribe.

I quickly realised that I’m one of the lucky ones. There are people with far more debilitating symptoms than me and, while I’ve been sick for 134 days, I am a newbie at this. Some people have been sick since the start of the pandemic — the real “long haulers”. 

I started checking in with my new peeps each day and found the community to be radiating with kindness and compassion. It’s a safe place to vent to people who understand, and I cannot overstate how much it helps to be heard and validated.

The people behind the page — Long Covid Support Aotearoa NZ — include 12 volunteer admins who are patients and doctors, sometimes both. They approve new members and filter posts and comments to ensure the group isn’t overrun by anti-vax conspiracy theorists or potentially dangerous content. For those hungry for legit information, there’s an offshoot Facebook page where the moderators post articles and studies. 

Behind the scenes the group is doing amazing mahi to advocate for long Covid patients. They’re working with researchers from universities to gather data, lobbying the government for GP codes to allow for formal diagnosis and pushing for WINZ assistance for those struggling financially. They speak at medical events to raise awareness and give us long haulers a voice. I’m so grateful to them. 

Because it’s so new there’s very little understanding about what exactly causes long Covid and there’s no proven “cure” other than to rest, rest, rest. While everyone waits for the science to catch up, all doctors can do is treat individual symptoms, often based on guesswork or existing knowledge of conditions that share similarities, like brain injuries, concussion, ME/CFS (chronic fatigue) and other post viral syndromes.

In the absence of real expertise, the importance of lived experience and anecdotal evidence from other long Covid patients is huge. Many of us in the online group are trying alternative treatments like dietary supplements and/or restrictions, acupuncture, and natural remedies like melatonin for sleep or CBD oil for inflammation. None of these come cheap and we’re mostly experimenting on our own dime, so it’s helpful to hear other people’s experience before spending money we don’t have on therapies that may or may not work. It feels a bit like crowdfunding but with tools for relieving symptoms.

But probably the greatest lesson I’ve taken from the community is learning to manage my “new normal” so I don’t get more sick or prolong the torture. I now embrace my daily nana nap, and have learnt the importance of the three Ps: Plan, Pace and Prioritise. This has helped me stop the harmful cycles of doing too much whenever I feel slightly better and paying for it afterwards with days in bed. I now know to ration some energy and brain function for things that bring me joy. 

The group serves up a cocktail of emotions – sadness, frustration, worry, fear – but there’s also hope and even the odd laugh over a meme or anecdote. I shared the story of own first slow crawl through the park post Covid, when I was overtaken by an elderly lady with a walking stick, and my new mates instantly got both the slapstick humour and the tragedy. 

Back in May, when I first discovered the group, there were 600 members. Now that’s almost doubled. It’s estimated that 200,000 New Zealanders are currently battling with long Covid, so membership is likely to keep growing. If you are 12 weeks post infection, still feeling like shite, and struggling to do this alone, do come and join our motley crew. The community will welcome you with open arms and accompany you on your journey through the fog.

Keep going!