Sisters

When my brother's illness broke into our lives 43 years ago, the world as I knew it collapsed. Everything changed. My mother clung to the hope that one day everything would be back to the way it was. She didn't want to face reality, which I can understand - it would have hurt her too much. But this 'just a little longer and everything will be fine' kept the family in a paralysing state for many years.

I was very young then, just 15 (and 8 years younger than my brother) and could hardly understand the situation. At first, my brother spent almost a year just lying in bed. Then came the first crisis when he thought we were poisoning him. There were many such moments that were difficult to bear, and some are still associated with fear today. All of us lived in a two-room flat, which made the situation even more unbearable. Each of us withdrew into our own inner world. My brother's illness had changed us all and reshaped our daily lives.

Therapy options were few four decades ago and mainly limited to medication. We as a family were hardly involved by the treating physicians. There was no discussion about how we could help as relatives, no information about the disease and its dynamics. Instead, we were presented with a fait accompli regarding my brother's medication. When he was in hospital, it was as if the family were invisible. As soon as he was discharged, we were fully responsible again. It felt like we had no voice and no support. This dehumanisation and ignorance of the role of the family was humiliating for all of us.

My brother and I were never very close. I was much younger and always wished to be closer to him. He was a role model for me before he became ill. With his illness, I lost the brother I had known and admired. I had hoped that in time, when we were older, we would develop a closer relationship. But that never happened. Instead, in bad times, we were often bound only by his rules and demands. Sometimes I had to take a lot of insults from him. It was painful to see how he behaved towards my mother and me. But I knew it wasn't really him - it was the illness. Still, it was hard to endure this dynamic.

In the family I became invisible. My parents never really got to know me. Outwardly, I seemed like a child from a good home - quiet, well-behaved, unremarkable. But inside I was in turmoil. I didn't want to 'add to the problems', so I held back and tried to be the 'good girl'. Inside I felt sadness, anger and loneliness. At the same time, I felt guilty for having these feelings in the first place. It was a constant struggle. 

It was especially hard because I was very sensitive as a child and I could clearly feel the unspoken tensions in our family. I felt responsible, particularly for my mother. I always hoped to cure my brother first and then think of myself. I denied myself my adolescence because I was too busy taking responsibility.

Over time, I made peace with my family, my past and myself. Today I tell myself a different story about my life, knowing well what it was like. I want to live in the here and now, without the past or the future interfering with the present. I have learned to give myself what I didn't get from my family. It's never too late for a good childhood, as they say, and I have decided to live my life in such a way that I am well today.

It was only when I came across a supportive community for people who have a seriously ill or deceased sibling that I realised I was not alone. For the first time, I was able to talk about my experiences and realise that siblings have a story too. It was here that I learnt that happy moments were not a betrayal of my family, that I was allowed to be free. Talking about our experiences together showed me that we are all fighting similar battles and that it is important to support each other.

Today I am at an age where the past and the future are in balance, but the memories of the past remain and the wounds are slow to heal. It is important to seek help. Breaking the silence is the first and most difficult step. But it is worth it. Among like-minded people, you will find that you are not alone, that you are not a traitor, but a human being with your own story. Have compassion for your parents, your siblings and most of all for yourself. Live your life because you have the right to be happy. Use your experiences to become stronger and more compassionate. Everyone has a story, and we can make something beautiful out of ours - something to share with others.