Schrödinger’s covid: my experiences with covid testing in the UK

I’ve had a rather bewildering week, having tested positive for covid but still having no idea whether I’ve actually had it or not. I’m feeling absolutely fine physically, but the whole experience has taken rather a toll on my mental health and taken me on something of an emotional whistle-stop tour of despair, guilt and confusion before finally arriving anger at how the systems that are supposed to protect us simply don’t work. It felt important to share my experience here.

Wednesday 30th September

I took a swab test that I was sent as part of the Ipsos Mori/Imperial national surveillance survey, which is sent randomly to households throughout the country in order to gauge the prevalence of covid in the population. This swab collects any virus that is currently present in the mucus membranes at the back of your nose and throat, and is then sent off to a lab which will amplify and detect viral genetic material on the swab. I had no symptoms and no reason to suspect I might be infected, but wanted to help the national covid response by contributing my data and, honestly, I was also rather curious about how the test worked and having been the kind of kid who touched electric fences to find out what they felt like wanted to give it a go myself. Not expecting anything other than a negative result I then sent it off, forgot about it and got on with my week. I went for a lovely long walk with a friend then then took three trains and a taxi to spend a weekend camping at the bushcraft school where I volunteer. Meanwhile my girlfriend, with whom I share not just a flat but a bed, went shopping to Morrison’s and dropped some groceries round to the immunosuppressed friend we sometimes shop for.

Sunday 4th October

The bushcraft school I volunteer at has done an excellent job of creating infection control guidelines, and been diligent in adhering to them. Nevertheless it was a horrible shock on Sunday afternoon, after spending the weekend with the attendees and course leaders, to check my phone and see the following email which had been sent that morning:

Thank you for completing the COVID-19 swab test.

The analysis of the swab test you sent was POSITIVE. This means the analysis detected the COVID-19 virus.

Although results are not 100% conclusive, it is important that you and your household members carefully read and follow the Stay at Home Guidance on https://www.gov.uk/coronavirus.

It is very important that you and your household members follow the guidance whether or not you have symptoms. Staying at home will help prevent the spread of the virus to family, friends, the wider community, and particularly those who are clinically extremely vulnerable.

For current Government guidance about COVID-19 and testing, please visit https://www.gov.uk/coronavirus.

We will inform NHS Test and Trace that you have a positive test result so that they can contact you. For information about NHS Test and Trace please visit https://www.gov.uk.

Thank you for taking part in this important study.

Yours sincerely,

Ipsos MORI/Imperial College London

COVID-19 Testing Research Team

I immediately told the bushcraft school leader, who informed the course attendees, and phoned the people I or my girlfriend had seen since Wednesday to tell them to isolate. I attempted to mark myself as positive on the contact tracing app, which I had dutifully downloaded and left running whenever I left the house, but got my second nasty shock of the day when I discovered I couldn’t enter my response without a code. I emailed the study to ask for one, got an automatic email back to say they would reply within 72 hours, then another email to say that they hoped to integrate the code in the future but for the moment their results aren’t compatible with the app.

And then I fell apart.

I make no secret of the fact that I have a number of mental health difficulties, and while I have been doing immeasurably better in recent years than I was a decade ago I suspect I shall struggle with depression all my life. One of the worst ways my brain likes to lie to me is to tell me I am doing harm to those I care about by my very presence or even existence, and everyone would be better off without me. The idea that I had potentially given people I love, care about or respect a deadly disease felt like every one of my worst fears made manifest. I collapsed in a sobbing heap in the wood, screaming at anyone who tried to come near to go away in case I infected them. While I am not proud of how I acted, causing additional inconvenience to the bushcraft school leader while he tried to sort out the logistical implications of my positive result, today is world mental health day and the only way we will break the stigma about these conditions is to talk about them openly. I am not proud, but nor will I be ashamed.

No one at the bushcraft school, neither leaders nor course attendees, showed me anything but kindness and compassion for my test result or my reaction to it. While I remain incredibly dispirited by the delay, bungling and bullshitting that have comprised the official response to the pandemic, I find hope in the incredible everyday acts of human decency and connection that have occurred in the community. People haven’t just sewn masks, shopped for vulnerable people and established mutual aid groups, but have dramatically inconvenienced themselves to help one another. A self employed friend who lost all her income at the beginning of lockdown was given two months off her rent. And when I thought I was going to have to spend two weeks isolating in the barn instead of getting a train home, one of the course participants volunteered to drive me home, going two hours out of her way in the pouring rain with a snivelling, borderline hysterical plague-bearer in the back of her car. I can never pay her back, I hope some day I can at least pay it forward.

Now in a calmer frame of mind I am able to recognise that the fault here is with the institutions, not me. I wouldn’t have gone out and interacted with people if the test results had taken less than five days to come through. (I also contacted someone about enrolling in a covid detection study he was running but was told he only needed people within 72 hours of the test – quite apart from how a five day wait for results is affecting the spread of the virus it’s probably hampering research too.) The app and the various testing regimes should also be integrated, so that any positive result comes with a code that can be entered in the app. I should also have been contacted by NHS Test and Trace, of which more below.

Monday 5th October

Fortunately I had already booked a day’s leave from to sort out my camping gear, which proved invaluable in dealing with the implications of my positive test result. Something I should perhaps have expected was that everyone who I contacted about my result expected me to be able to advise them what to do nest and whether to isolate, but I had no idea myself only having been given the links in the letter above. I hope if you’re contacted about a positive result by NHS testing, rather than by the survey, you get a little more guidance and information.

Although the letter said that I would be phoned by NHS Test and Trace I have still not heard anything from them as of the 11th of October. I can only assume that my details were among those lost when manually importing data from a .csv file to an Excel spreadsheet. I have to say that I find it absolutely astounding that apparently in excess of £35 million has been spent on the UK’s contact tracing infrastructure and none of that was spent on developing better data handling infrastructure than this; I have a background in biochemistry not computer sciences, and have only briefly dipped my toe into working as an extremely junior database admin, and even I could have designed a better system.

I therefore effectively did my own contact tracing, telling everyone I and my girlfriend had interacted with since my swab test about my positive result and letting them make their own decisions on what to do on the basis of often incomplete and contradictory information we found by googling. My girlfriend self isolated too, even though the official government guidance states that “If you do not have symptoms of COVID-19, other people in your household do not need to self-isolate at home with you.” The bushcraft school shut down for two weeks, a further loss of income after not being able to hold courses during lockdown. People cancelled long awaited physiotherapy and dental appointments and flu vaccinations. And the absolute saint who drove me home contacted me with a problem.

Incredibly, the NHS website states:

Tell people you’ve been in close contact with that you have symptoms

You may want to tell people you’ve been in close contact with in the past 48 hours that you might have coronavirus.

What does close contact mean?

They do not need to self-isolate unless they’re contacted by the NHS Test and Trace service. (emphasis mine) But they should take extra care to follow social distancing advice, including washing their hands often.

She had been told by her employer that wasn’t allowed to self to self isolate unless she was officially contacted by Test and Trace. As they hadn’t contacted me at that point (and still haven’t) I had no idea how long it would take them to contact her, and as she worked with clinically vulnerable people she didn’t want to go to work but nor did she want to lose her job.

A friend with whom I shared her dilemma suggested that she draw up her own isolation note, then suggested that she report her employer to the anonymous hotline for covid whistleblowers when this proved insufficient. I really feel that, while I can understand that the guidance may have been drawn up when it was assumed the Test and Trace system would work, it really should be acknowledged at this stage that it doesn’t and people should be able to self isolate when they’ve been in contact with someone who’s tested positive regardless of whether they’ve had a call or not.

Not seeing what else to do I then decided to request a second, NHS covid test, in the hope that if I was positive a second time I would be contacted by Test and Trace and she would be able to isolate while keeping her job. I am aware that booking a test when asymptomatic is not strictly permitted at present, and I did have to lie on the form to request it, saying that the council had asked me too as I didn’t want to say that I had symptoms as I didn’t want to potentially affect data collection. I know that there is a shortage of tests and processing capacity, and by doing this I may have deprived someone who needed it more of a test, but in the circumstances I felt my actions to be more justifiable than, say, driving to Barnard Castle to test your eyesight. I am also aware that the degree of privilege I have as a white, middleclass woman makes me feel safer confessing to something that may be illegal in a public blog post than others who are less likely to be judged leniently by both public opinion and the justice system may be.

Tuesday 6th October

The test arrived and I swabbed myself again, then masked, gloved and doing a passable impression of South Park’s Kenny with the hood of my anorak, scurried to drop it in the priority postbox. It was only when I got back that I saw at the back of the accompanying leaflet (after the posting instructions) that if you feared you were contagious you cojld book a courier to collect it.

Thursday 8th October

I received a rather dogeared letter informing me of my positive result in the post, that as far as I can tell is an exact copy of the email I received on Sunday. Presumably if I hadn’t had access to email this is the first I would have heard of it, eight days after my positive swab, rather than the only fractionally less useless five it took to get the email. As the physical letter is presumably aimed at people without internet access who wouldn’t have received an email, it seems rather unhelpful that it had no phone numbers in, just urls. The letter was simply dated “October 2020”, no date, presumably to allow deniability of how long it took to send out.

Saturday 10th October

I’ve now had the result back from the second covid test I took on Tuesday, and to my relief tested negative.

So did I ever actually have covid? I might never have had it, and the first test was a false positive, the probability of which scenario remains to be determined. I might have had it asymptotically and recovered and both tests were correct, I might still have it and the second test is a false negative. Hindsight is a terrible thing, and I’m now examining how I felt in the run up to my first test in far more detail that I would otherwise. I found my regular run the previous week unusually hard going, which I attributed at the time to being on my period, and after taking the first test I had a sore throat all day, which I attributed to having just tried to stab myself in the brainstem with the equivalent of a tiny toilet brush on a stick. Both of these could have been symptoms, or they could not. I seem not to have passed it on to anyone I interacted with, but then again I have been extremely careful about mask wearing and distancing outside the house.

Although I have felt absolutely fine physically throughput the whole episode, this week has taken quite a toll on my mental health. Irrationally I feel guilty for two mutually contradictory possibilities: potentially exposing people to a deadly virus and conversely causing people a huge amount of worry and inconvenience if it was a false positive; the bushcraft school has lost two weeks of income, the woman who was kind to me is now looking for a new job, people have delayed appointments for health conditions and worried about me. I wonder too whether I am doing the right thing by sharing this; will the suspicion that it was a false positive embolden people who think it was all a conspiracy? On the other hand if it wasn’t, will the fact I managed to catch the virus after being so careful about mask wearing and social distancing make people decide that these measures aren’t worth bothering with? The only thing that I can be sure of in this is that none of this would have been so difficult if the system that are supposed to protect us actually worked.

As with everything in this, you can know on a population level that a certain percentage of tests are false positives and a certain percentage of people are asymptomatic, but that doesn’t really help you make decisions on an individual level. My girlfriend and I are erring on the side of caution continuing to isolate until the 1th of October, which will be two weeks after my initial positive test. While I can’t know definitively whether I have done the right thing throughout all this, I do at least feel that I made the best decisions I could in light of the information I had at the time and with the intention of protecting people to the best of my ability.

I wish I believed the UK government was doing the same.