For many people, the story of Long COVID begins with something that seems ordinary.
A mild infection. A few days of illness. Then the expectation that life will simply return to normal.
But for some of us, that is not what happened.
Weeks after the initial infection had passed, new symptoms began appearing symptoms that did not seem to follow any clear pattern. Extreme fatigue. Brain fog. Breathlessness. Sudden heart rate changes. Unusual sensitivity to physical or mental exertion.
Many people experiencing Long COVID describe a similar moment of confusion: the realisation that recovery is not following the path everyone expects.
This website grew out of conversations between people living with Long COVID who were trying to understand exactly that.
We realised that many of the daily realities of Long COVID the unpredictability, the invisible symptoms, the challenge of explaining the condition to others were often missing from the information available online.
So we decided to create a space where those experiences could be shared.
The insights on this website come from people living with Long COVID who have spent months or years learning how to navigate symptoms such as post-exertional malaise (PEM), dysautonomia, cognitive fatigue, and fluctuating energy levels.
Although the stories here are written in a personal voice, they reflect shared experiences from more than one person. Many people living with Long COVID prefer to remain anonymous, particularly because the condition can affect work, family life, and daily functioning in complex ways.
For that reason, the stories and reflections on this site intentionally protect the privacy of those involved. Some examples combine elements of different experiences in order to illustrate patterns that many patients recognise.
Long COVID can be confusing and often isolating. Symptoms may improve for a while and then unexpectedly return. Activities that once felt simple walking, concentrating, socialising can suddenly require careful pacing and energy management.
Through this project we hope to share insights that many people discover only after months of trial and error: how to recognise early signs of post-exertional malaise, how pacing can help stabilise symptoms, and why recovery rarely follows a straight line.
If you are newly experiencing Long COVID symptoms, or supporting someone who is, you may find that many of the situations described here feel familiar.
You are not imagining it, and you are certainly not alone.
A shared project
This website is a small collaborative effort created by people who have experienced Long COVID and wanted to document the realities of living with the condition.
The goal is simple: to make the Long COVID journey easier to understand for those who are going through it and for those trying to support them.
A note of thanks
We are also grateful to the clinicians, researchers, patient communities, and support networks who continue to work towards a better understanding of Long COVID.
Many people living with the condition have generously shared their experiences, insights, and encouragement along the way. Their willingness to speak openly about what they are going through helps others feel less alone and contributes to the growing awareness of this complex illness.
Disclaimer
This site shares personal experiences and reflections, including those of guest contributors. Articles are written gradually over time and reflect personal experiences shared by people living with Long COVID. Publishing may be irregular depending on health and energy levels.
The information provided here is not a substitute for professional medical advice. Please consult a qualified healthcare provider regarding diagnosis, treatment, or medical decisions.
No responsibility is assumed for actions taken based on the content of this site.
Long Covid Journey 