When we become ill, we expect the illness itself to take most of our energy.
But often, the system around it demands energy too.
Appointments. Medical reports. Referrals. Documentation. New doctors, to whom we have to explain our medical history all over again. Dealing with sick leave, rights or workplace adjustments. Telephone calls, forms and questions we have to answer just when we have the least energy.
With invisible and harder-to-recognise illnesses, there can be an additional difficulty: the feeling that we have to prove, time and again, that something really is wrong with us.
After years of this, a person may simply have no strength left.
They do not want to tell the whole story again. They do not want to explain once more how much their symptoms limit them. They do not want to come away from yet another appointment feeling that they did not say what they wanted to say.
Yet it is precisely in these situations that we often need to be able to advocate for ourselves.
What is happening to me? How does it affect my everyday functioning? What do I want to ask at the appointment? What information is essential? What do I need from my employer in order to continue doing my work?
These are not always easy questions.
Especially not when we are frightened, exhausted, or have only a few minutes to talk.
Preparation can therefore be an important part of advocating for our own needs: putting documentation in order, organising our medical history, identifying the most important questions, and describing our limitations clearly.
Not so that we become doctors ourselves.
But so that, in a system where we are often just one of many patients, we can present our experience and our needs as clearly as possible.
Illness already demands an enormous amount of energy.
Sometimes it is important to reduce the energy we spend having to prove and explain it time and again.