Living with Lingering Covid-19 is an unpredictable roller coaster of a ride, Published in the Daily Maverick, 18 June 2020
It is striking how many of us living with Covid-19 are desperate for more research into this new and scary virus. The simplistic binary messaging – ‘nasty bout of flu’, or fatal disease in the elderly’ – is simply not the lived experience of so many of us.
I just met Covid-19 royalty.
Last week Paul Garner invited me to connect on LinkedIn and the first thing I noticed – after reassuring myself that we already had 67 contacts in common – was that one of his articles seemed to be titled I’m still unwell Eleanor.
I was intrigued.
It’s now Day 45 since I tested positive for Covid-19, and, scrolling through his page – as I chatted with a professor of infectious diseases at Liverpool School of Tropical Medicine – was tremendously reassuring. Turns out that Garner’s article isn’t really called I’m still unwell Eleanor – that was just an artifice of odd LinkedIn badging. Actually, his opinion piece, published in the British Medical Journal on 5 May, is titled: For 7 weeks I have been through a roller coaster of ill health, extreme emotions, and utter exhaustion”.
I quoted some of his descriptions of living with Covid-19 – in his case, since mid-March – in my own ‘coming out’ article published a couple of weeks later. I’ve been sent Garner’s piece – published the day before I got sick – many times and have shared it even more. In the beginning it was incredibly comforting. Even in early May – stranded in bed coughing and checking my oxygen levels – all the descriptions of Covid-19 were binary: either you should be utterly terrified of being dragged into hospital to die from a lack of oxygen and no working ventilators; or you could expect a version of the flu, which you would breeze through in a week.
For many of us, it is neither of these things.
Living with lingering Covid-19 is far stranger. My experience is not as severe as many others, but it is certainly very odd and even life-altering. I can be glued to my laptop for hours (often on the sofa, I confess, or in bed as I am now) pumping out the words, working through masses of emails and attending multiple webinars.
And yet it is the act of getting up off the sofa that I find most challenging. Once upright, I might potter around and prepare some food; my appetite has been raging, but for a peculiar array of substances, often sweet. Soon after I stand up, the dizziness, confusion and “brain fog” tends to kick in. Frequently I find myself standing in the middle of my (very small) flat wondering what I was looking for, then noticing that I’ve put the washing up in the compost bin and left the fridge door open as I’ve wandered off to the other side of the room.
Never one for meds, I’m now accustomed to popping paracetamol for the near constant headaches – and there is a strange symptom that bites daily.
Psychiatrist Ginevra Read got sick on 16 March. She talks about it as “internal shaking”. Former British MP Jo Platt – diagnosed on 24 March – writes, “I have a really strange sensation in my legs, as if I’ve been hill walking.” Until I read about the concept of “internal shaking”, I called it “fizziness”. It’s as if I can feel every cell in my body vibrating from the inside out. I might say my legs are like jelly, but the sensation seems to be racing through every organ and limb, leaving none of them behind.
It was really debilitating last week.
I’d gone to visit my mother for the first time. She had just been released from a short hospital stay to deal with the nasty after effects of five weeks of radiotherapy. Sitting on her sofa at a safe distance (and, yes, I washed my hands vigorously on arrival), I found myself rapidly spiralling into a ‘fizzy’ weakness. My son had to drive me home after 30 minutes. I’d been away from the house for no more than two hours and was back on the sofa, unable to move until I dragged myself to my bed a couple of hours later.
This was the furthest I had ventured in the past six weeks, and the next day I was utterly exhausted. Eventually I moved from the bed to the sofa but found I couldn’t focus even on the trashiest of daily newspapers – my growing stack of excellent books stared at me accusingly as I drifted in and out of sleep. In the late afternoon I dialled in to join David Nabarro’s weekly Covid-19 briefing as a bit of light entertainment (anyone can join the weekly briefings and I’d highly recommend them). I found myself in a grid of squares next to Prof Garner, the man whose insights had kept me going over the past couple of weeks.
Nabarro is the World Health Organisation’s Special Envoy on Covid-19, having performed similar leadership roles for the UN Secretary-General on Avian flu, Ebola and the cholera outbreak in Haiti. His inspiring whirlwind trip around the world, reflecting on various community and official responses to the pandemic, fired me up and I was pleased to have the mental energy to dig into discussions about #BlackLivesMatter, intersectionality and how to tackle the rise in gender-based violence.
As someone who has spent so much time supporting and encouraging “expert patients” to share their lived experiences of HIV – and also to just get on with living and clocking up experiences that have nothing to do with the virus in their bodies – I’ve been struggling to adapt to my own new status as an “expert patient”.
So I was pleased to be able to contribute to Nabarro’s briefing as an expert and not only talk about my ongoing symptoms. When the intellectual banter is lively and engaging, it is so much easier to cope with (and conceal) the crushing exhaustion.
One thing that makes Covid-19 so fascinating is how so many people in the health sector caught it – either through working directly with patients or, in the case of global health leaders, travelling so much.
Our other member of the C-19 royalty, Peter Piot, head of the London School of Hygiene and Tropical Medicine, appears to have picked up his coronavirus at a gathering also attended by our own microbicides researcher, Gita Ramjee. She died from the virus in South Africa at the end of March, soon after flying back from London where, as honorary professor, she had given her final lecture.
Scrolling through Garner’s LinkedIn page, I took huge comfort in seeing comments on his article from friends in our shared global health lives. It was humbling to read of far grimmer situations, like the occupational therapist who commented:
“As an NHS worker (OT), probably infected at work and ill since March 4th, it is a sad relief to hear that I am not alone in being exhausted and functioning at about 20% of my normal capacity. Interesting that people presume we are better … Thank-you for being the voice of the thousands of us quietly struggling at home not understanding why we’re not getting better.”
Then there were other comments, like this one from a woman:
“I have myself reached day 80 (untested) and am neither recovering nor being hospitalised, and respiratory and other symptoms keep coming back as if I am in a roller coaster.”
Riding the roller coaster
The roller coaster analogy is really powerful – and not only because I have always loathed fairground rides. I keep sending joyful texts about recovering when, by midday, I am still riding a burst of glorious, near normal energy. Then I plummet into headaches and ‘fizziness’ and wonder if I must learn to adapt to the tedium of this, like I learned to adapt to the long haul flights of my “old normal” life.
What is striking is how many of us are just desperate to see more research into what is going on. (If you live in the UK please consider joining this new research study – whether or not you have had Covid-19.) The simplistic messaging around Covid-19 (‘nasty bout of flu’, or ‘terrible fatal disease in the elderly’) is simply not the experience for so many of us.
But where is all the focussed attention and research in the UK? There’s no doubt it would be extremely valuable. For example, an observational study of 1,622 people in the Netherlands has just been published by Maastricht university, titled: “Survey paints shocking picture of health of coronary patients sitting at home.”
Some 40 years ago, a perplexing syndrome appeared – young, previously healthy, men were presenting with a diverse range of unusual infections and cancers. After a few years of neglect, the scale-up of research into HIV/Aids seemed impressive, but as the world now battles to keep alive the 32 million people living with HIV – having already lost 43 million more to Aids – we realise how important questions were not addressed early enough. We took too long with HIV to understand how damaging the infection could be.
Let’s not make that mistake again.
Those of us chatting with Paul Garner and other survivors of the novel coronavirus have the capacity to reach out to each other and our friends on the Covid-19 frontline. But with over eight million global cases in less than five months, what we need now is more and better research – and not just for a vaccine. Anthony Zwi, an eminent professor of global health wrote sagely:
“The requirement by politicians for simple messages, yes/no, true/false and other dichotomised or over-simplistic and uniform answers, are indeed problematic. Perhaps it is up to us, researchers and academics and more importantly, science-informed journalists and communicators, to convey the nuances, population perspectives and need for context sensitivity in these trying times…”
It all feels very personal. One of the (many) big questions I have about managing my own condition is whether I pose a risk to others.
Before visiting my mother, I paid to get a PCR test to double check my belief that I was not contagious. (My travails to get tested for free on the NHS are another painful story – my first attempts are touched on here – but since then there have been more failed efforts).
All the public information and most of the literature describes how the infectivity phase of this curious new condition rages for the first week or so – starting a couple of days before you get sick – and then drops as the symptoms take over.
This is part of why it is so dangerous. Up to a week before any symptoms kick in, your body is busy brewing the virus and, as it is happily multiplying, you are shedding and can unwittingly pass on the virus to others.
There is nothing particularly surprising about this. The pattern of early HIV infection is very similar. I was learning and teaching about HIV back in the 1980s, as the evidence was emerging, and so it makes perfect sense to me that there is an early burst of viremia straight after infection (for a few weeks or months in the case of HIV); and at that time the virus is only detectable by antigens. It is only after several weeks (six for HIV, two or three for Covid-19 it seems) that the body has produced enough antibodies for a test to detect if you have come into contact with this new virus.
We’ve been busy with “syndromic management” of my own condition for nearly six weeks, so my interest in testing was not to know if I had Covid-19 – that is obvious – but rather whether I could pass this vile virus on, especially to someone whose immune system is compromised.
An interesting aside: a recent paper by Jeffrey Laurence in AIDS Patient Care and STDs (Vol 34:6, 2020) suggests that people with Aids and people with cancer are actually less likely to get seriously sick with Covid-19. The reasons are unclear, but it seems to be related to how the immune system is functioning (rather than the use of antiretrovirals), and bolsters scientific thinking that the course of Covid-19 is a curious interaction between the virus and the host response (the strength of the body).
“It’s the virus, stupid” – or is it?
In early HIV activism there was a catchphrase: “It’s the virus, stupid!”. In Covid-19 it may be something more.
My hunch is that, as the host ages, the course of the disease changes. In my HIV work I have been a fierce advocate of using age-disaggregation and gender-disaggregation to see how the disease and services to support communities differ according to need. We need the same for Covid-19.
Why is it that my 22-year-old son was horribly sick for a week in March, with nasty night sweats, dreadful coughing and a painful chest, and then bounced back to “normality” within a week? Whereas at the height of the crisis, thousands of people in their 70s and 80s were regularly carted off to hospital and, tragically, many of them never made it home. The evidence suggests that very few of us in our 40s and 50s will get the fatal brand of the disease, but a far larger, growing number of us have lingering symptoms and may need to settle into having the virus for the long haul.
But who knows how long that haul will be?
I’d been extra cautious about leaving the house for the first couple of weeks after I got sick. Four weeks after my symptoms appeared, as my mother was released from hospital, I needed to know if it was okay for me to go out.
I’d read one article that suggested viral shedding could continue for several weeks after symptoms presented, but this was based on early studies in Wuhan, looking at the most extreme cases of people who had been hospitalised and on ventilators for many weeks.
There are anecdotes of people passing on the virus weeks after their infection, some of whom had even tested negative. But I also remembered that in Peter Piot’s personal story, he talked about returning on a London bus from his hospital stay. I know that, like me, he would be super cautious and vigilant about never putting others at any potential risk. The balance of probability was that I was not contagious – but of course I wanted to check before going anywhere near someone with low immunity, and especially one who was already wrestling with the nastiness of a second cancer diagnosis.
It was a relief to get a result – “antigen negative” – that told me what I suspected: most likely the virus is not multiplying actively in my body right now.
In the week following that news my energy levels seemed quite buoyant. The day before my son came to pick me up, I’d turned the music up loud and danced around with a vacuum cleaner, cleaning my flat for the first time since April. It seemed like a promising sign that things were on the turn.
We all think we know the story of disease: it is a slope going up or down – you recover, or you sicken and die. That is the public story of Covid-19. But we must now get more nuanced information out to people. If you want to turn the corner with a pandemic, what is needed is focused interventions that describe the complexities and reflect the different impacts on different groups of people.
The lingering, ‘long haulers’ will only grow in number as our world learns to live with this strange pandemic. Deep into my second month, I can bear witness that some variants of this disease are an unpredictable roller coaster. I would never have chosen to get a ticket, but what I do want – and what we all need right now – is much more information and research on how to manage life on this strange ride.