The word ‘forever’ carries something beautiful within it. A promise that happiness will last. When I was little, I imagined that I would first hear it on my wedding day, in a white dress.
I did not know that the person who would say it would indeed be dressed in white — only that it would be a doctor in a consulting room.
The invisible illnesses I speak about in Labirint are chronic. Treatment can ease the symptoms, the condition can improve, and good days can become more frequent. But illness often has no point at which we can say: this is over now.
With chronic illness, ‘forever’ takes on an entirely different meaning. It is no longer a promise. It means there is no end point.
We are used to dividing life into units of time. A difficult period is easier to endure if we know roughly how long it will last. Two more weeks. Until the next appointment. Until Christmas. Twenty more minutes to the top of this mountain.
When we know the destination, we can map out a path. If we want to run ten kilometres, we make a training plan. If we want to achieve something at work, we know at least roughly what steps to take. The result is not guaranteed, but we have a sense that our actions can influence it.
With chronic illness, this logic often breaks down.
It is not only the end point that disappears. The sense that time is moving towards it disappears too. We can no longer assume there will be a ‘when I am well again’. There is not necessarily a life after illness. There is life with illness.
Along with that, the sense of predictability disappears.
It might be easier to learn to live with 30 per cent of our former energy if we knew we would have 30 per cent every day. It is much harder to plan a life when we have forty today, five tomorrow and twenty-five the day after.
We can do everything in our power, and the body may decide otherwise the next day.
So ‘forever’ is not only about how long the illness lasts.
It means a life without a reliable ‘after’.
We can no longer tell ourselves: just a little longer, and it will be over.
Accepting this does not mean giving up on improvement. It means slowly learning to live even when the body does not always respect our plans.