Each person living with multiple myeloma has their own unique story to tell
Read these three stories of people living with multiple myeloma.
“I accept the multiple myeloma. It’s part of me. Maybe it was part of me long before the treatment; maybe it will come back one day. This attitude allows me to deal calmly with it. I don’t see the point in fighting a disease. Then I would have to fight against my own body. I don't want that. I wanted to learn to live with my multiple myeloma.”
Andy opens our conversation with these words. From the outside, there is no indication that he is living with multiple myeloma. He greeted me enthusiastically and sat down opposite me.
When I ask Jeanine what she recommends to newly diagnosed people, she stops and thinks for a moment. “Keep positive,” she answers. Jeanine realises she has been doubly lucky: “These drugs weren’t available ten years ago. And I responded well to the drugs. My blood count is now the same as if I had never been sick!” She also thinks: “Everybody has to find out what’s right for them... And there’s no formula for that.”
It was clear to Karin that she couldn’t go back to her previous life. “I needed a new life plan.” She also had to find a new way to explain the chronic disease and constant therapies to her young daughter. “I was having terrible trouble explaining it to her: Why had the disease come back? Would I ever be healthy again?” She also had to make new professional and financial plans. Her new life model with multiple myeloma could be compared to permanently running a marathon. “Some bits were harder, some bits were easier. My life has been turned upside down.”
Karin has noticed that the disease changed her personality. “It happens without you trying. The forced downtime gives you space to think. You focus on what really matters: What’s important to me? What do I need and what makes me happy? Practical constraints and unimportant things all cease to matter, because you need all the energy you have for the recovery. My senses became more selective. I found joy in the little things that I used to overlook as a waste of time before I was sick.”