Invisible illness has a strange language.
Not because we use different words. Quite the opposite.
The words stay the same, but their meaning changes.
You say: ‘I am tired.’
The person in front of you knows the word. They have been tired too. Perhaps after a bad night, a demanding week or a long day at work.
But you may mean a kind of tiredness that makes it difficult to get out of bed and go to the toilet.
Both of you use the word ‘tiredness’.
You are not necessarily speaking about the same thing.
It is similar with brain fog. Someone may understand ‘I cannot think’ as that ordinary moment when they forget why they walked into a room. For the person who is ill, however, it can mean sitting in a meeting and suddenly being unable to put together five coherent sentences, even though they know that the knowledge is still there, somewhere inside them.
And shame comes with it.
How do we explain the difference to someone when we use the same word for both experiences?
This becomes important in relationships, at work and especially with a doctor. A person can describe their experience entirely honestly, while the listener unintentionally translates it through their own experience of the same word.
And so something strange can happen: two people speak the same language and both believe they understand each other, yet they imagine something completely different.
It can be different between people with the same illness.
Someone simply says, ‘It’s the fatigue today,’ and the other person already knows.
Not because they know a better dictionary definition.
Because they know the experience.
One of the loneliest parts of invisible illness can be this: we have words, yet even with them we cannot always show what it is like to live in our own bodies.
Sometimes the first step towards being better understood is not finding a stronger word.
It is learning to translate our word into an experience that another person can understand.