Sisters

I remember the day I was sitting again in the waiting room of the health insurance office. I had taken on the difficult task of organising health insurance for my brother who hadn't been able to think clearly for years because his world was dominated by voices and visions. 

My brother no longer had health insurance - a decision he had made in the midst of his psychosis. He believed he was enlightened, protected by higher powers and free from the constraints of this world. "I don't need anyone," he often said. But when one day he could no longer walk, I was faced with a seemingly impossible task. The bureaucracy seemed insurmountable: Forms, documents, certificates - I could hardly understand what was being asked of me. I was so exhausted that I could barely hear what the officials were saying. Every step took forever and felt like a drop in the ocean. 

Another pain point was the health care system itself. Doctors and staff were often helpful, but their hands were tied. No one was allowed to speak to me without my brother's express permission. He often told the doctors a different story than he told me. It was years before I was able to understand, with the help of medical records, what had actually happened.

This lack of communication was crippling. I didn't know what the options were, what help might have been available or what my rights were as a family member. All of this could have eased the pressure, but instead the burden grew with each new hurdle.

Fear was my constant companion. It crept into my nights and held me in its grip during the day. I was particularly tormented by the uncertainty of the future. My mind was constantly inventing scenarios in order to be prepared, but these fantasies were mostly dark and paralysed me more than they helped. At the same time, I felt trapped in an endless cycle. As long as my brother didn't acknowledge that he was ill, nothing would change. He clung to the belief that he just had ADHD and refused to take the necessary medication. The depot injection was the only small success I was able to achieve. 

A counsellor at a self-help family organisation, which came into our lives far too late, finally showed me that I wasn't the only one carrying such burdens. It was a relief to know that there were others in similar situations. But at the time it still felt too far away. I wished for more understanding from the family - especially that they would at least try to understand what it was like to struggle day after day without being able to achieve anything. The lack of education in the family about my brother's illness only made the situation more difficult for everyone. They didn't want to understand. They couldn't understand. 

What helped me in the end was not just the exchange with other family members, but the fact that at some point I started to look after myself. I had to realise that I had to set my own limits, otherwise I wouldn't survive. The journey is still difficult, but I can see glimmers of hope. There is still a lot of work to be done - for my brother, for me and for the system that often leaves people like him alone. But I have learnt that even the smallest progress is valuable. And that's what keeps me going.