Willful ignorance
This post is written in an attempt to reckon with my feelings of rage and bitterness on Long Covid Awareness Day. Six years ago, my friend Ondine (who I bade farewell to a year ago today) and others, made a video that was intended to be a message in a bottle. To warn people of Long Covid. To ask for help.
Six years is probably enough time for this bottle to have arrived intact on some far away shore, and to have been discovered by others. Personally, it feels like the message was read, crumpled up and thrown back into the ocean.
For six years, we've been asking for recognition, research and rights. In recent years, Long Covid Clinics have closed, been scaled back and to be honest always left us disappointed. The truth is, while some have recovered, many of us are still missing from society since the first wave of the pandemic. And while the UK Office of National Statistics used to count us, it no longer does. The closest we have to a count is the responses in the annual GP Patients survey for England – in 2025, 4.2% reported having Long Covid and 9.5% were unsure. The scale of this suffering is still hard to take in, all these years later.
And we haven't just been concerned with ourselves, the unlucky ones to be disabled so early by this novel virus. We've pleaded with other people to protect themselves and their families from this serious disease, and we've pleaded with a largely moribund public health sector to play its role and take action to protect health workers, patients and school children.
We've been met with a wall of silence, including from a public health secretary who struggled with Long Covid himself.
Society and policy makers have decided that repeat, frequent Covid infections will be our way of life now. In spite of very worrying data about the impacts of the disease.
As I write this, a very close friend's teenage child has just been diagnosed with POTS and is showing very worrying signs of extreme post-viral fatigue. For her post-viral condition, there are no new treatments, there is no new help for her. Six years later, all I can recommend some intensive vitamin supplementation, and radical rest and pacing. Her mother doesn't dare to call it Long Covid.
I live mostly at home, a very Covid-cautious life. I've even stopped checking on the project to create a sterilising vaccine, that would allow me to stop masking indoors when I do have the energy to go out. A couple of years ago, I still held out hope that I could one day socialise “normally” indoors. Now I've simply given up. This is our life now. I can hardly handle the noise in indoor cafes and restaurants anyways. Same with music gigs, or anywhere people talk loudly in numbers.
To be quite honest, I feel like an outcast from society. This society hates the sick and disabled, and it definitely hates mask-wearing people who remind them they could become sick and disabled through the air they breathe at any time.
Today is labelled a day of awareness, but we must recognise in the case of Long Covid, we are not merely raising awareness. We are combatting willful ignorance. People actively do not want to know about Long Covid, and the long-term health consequences of Covid infections. They do not want to see us. This is the plain truth.
In light of this, and my hermit life, I must recognise the organisations and projects that are actively standing up to ignorance. They give me hope and make me feel slightly less alone.