A small proportion of Covid-19 patients continue experiencing symptoms long after they test negative. Freya Sawbridge, one such ‘Covid long hauler’, describes what it’s like.

Four months have passed and I’m onto my fifth relapse. The room is eerily still yet my mind spins like the stripes of a barber’s pole. My brain pulsates and every vessel twists. Something is scraping the wrinkles in my brain as if a mini person is going at it with a tiny rake. The diarrhoea begins followed by the chest tightness and back pain. I dart between shivering and overheating. Different parts of my body are sporadically going numb.

I end up in hospital late that night. I’m designated “low priority”. Five hours later, a doctor whips the curtain back. I explain my issues and stress my “brain fog”.

“Brain fog? That’s not even a proper medical term,” she says. If you could walk in here, you are fine, she tells me. I’m sent home.

We’re told sickness has a linear trajectory. You fall ill, feel bad, and then gradually improve before you recover. But this coronavirus can work in a cyclical fashion. In my case, I was consistently ill for two weeks before feeling fine for four days then suddenly falling ill again for another two weeks. I spent the next two months relapsing and recovering. This follows a similar pattern to the hundreds of others still battling debilitating effects months after first contracting the virus, despite most of us now testing negative.

You might see me and I seem fine, because unlike many of the 5,500 members who belong to the “Long Haul Covid Fighters” Facebook group, thankfully I can walk and move about without feeling total exhaustion (extreme fatigue was never one of my prominent symptoms). I appear well but I am not. My functioning facade is vastly different from what I experience on the inside. I joined the Long-Haul Covid Facebook group three weeks after I tested positive for the virus back in March. This group has been my primary source of strength throughout this ordeal. I truly believe I would go mad if I didn’t have the kindness of other people in this group who still take the time to speak to me and validate my symptoms when so many refuse to.

I overhear people say they’re not worried about catching it. “I’m young, I’ll be all good,” they scoff. This could be true as many people are asymptomatic or present only mild symptoms. But there’s no guarantee of this. I am 26 with no underlying conditions and have been sick for the last five months.

There remains so much that isn’t known about Covid-19. We are now seeing studies which validate long-haulers and show it is not just “all in our head” or a result of anxiety, as many of us have been told time and time again. These stories and reports reveal how complicated and varied this novel virus is.

One recent report involving over 600 long-haul patients revealed that neurological issues are just as common a symptom (reported by 70%) as coughing. Hannah Davis of the Guardian explained: “Of those studied, 61% experience dizziness, 32% experience numbness in the extremities, 29% experience hallucinations or lucid dreaming and 27% experience short-term memory loss.” She noted that the Centre for Disease Control estimates 20% of young people with no pre-existing conditions will have prolonged recoveries, far beyond the two to three week estimate.

The nonlinear range of symptoms was also validated by the Covid Symptom Study produced by King’s College London. It showed patients experienced a variety of symptoms such as headaches, increased heart rates, chest pain, gastrointestinal and neurological symptoms for weeks and months following the initial infection.

Debbie Bogaert, an infectious disease specialist, is a Covid-19 long-hauler. She told the Guardian, “We currently have no understanding at all of the biological mechanisms causing these prolonged symptoms … This virus is not comparable to a simple flu. Therefore, we should focus on suppressing the virus as much as possible, even attempting to eliminate it, while we wait for the development of a vaccine.”

I can understand why there’s widespread ignorance in regard to the long-term complications of coronavirus because I’ve been guilty of this reaction towards other people’s illnesses in the past. When you are well and healthy you do not concern yourself with stories of sickness; you want to get on with your life and keep living. This is also why we turn a blind eye to images of animals in factory farms or civilians fleeing war-torn cities. We’re on a big comfortable launch riding the wave of privilege, why would we bother wondering how it feels to navigate the ocean from a dingy?

“Something just isn’t right and nobody believes me,” I cry with broken raspiness and collapse into my mother’s arms. I want my old body back. I want to go hiking. I want to live in Germany. Will I ever be able to do these things?

I am scared, but I feel immense gratitude for what I am still able to do. I can still sometimes read, go for gentle walks, have conversations. And I can write. These wrap my daunting “what ifs” in comforting cotton wool and make them a little less frightening.

So that’s what I will do, until the science is built, and more in the medical community start taking us long-haulers seriously and I emerge from the fog. I will write my way through it. My story will be a warning to others: This is so much worse than a cold.