Hi, I'm Ansel, I’m 27,
I'd like to tell you a story.
A sad but heartwarming story about an experience with an incurable disease.
My story,
One morning, the disease entered my life.
In 2020, my husband was diagnosed with an incurable disease.
My whole world collapsed, and so did his family.
I wasn't very surprised when the doctor said that the disease had become incurable.
For me, the shock was palpable.
But it was difficult to know exactly how he felt because I myself was distant and withdrawn and avoided any conversation about illness and death while he had to talk.
In 2023, I was diagnosed with an incurable disease.
Suddenly, I understood the finitude of human life.
In this moment, I also understood that everyone experiences and faces illness in their own way.
On my side, I had gradually started to recognize in my body, the signs of my declining health.
Over the months, we created meaningful moments where we could really communicate.
We sought to be more in touch with each other’s experiences.
The healthcare team also encouraged us to express our wishes and life goals, that they could be adapted to our condition.
I looked and learned to prioritize moments for ourselves.
I also created more opportunities to share moments of happiness with the family.
We had ups and downs.
I could see that the people close to me needed to help me more as I became more tired and less independent.
My husband had to re-evaluate his role in our family.
He has become a very important support for me and has fully embraced his role as a carer, despite having an incurable illness himself.
Even though our feelings and reactions to illness and death were different, we found out how we could walk this path together.
It was also very difficult for my parents-in-law, I could see how helpless they felt.
What an injustice that their son and daughter-in-law would die before them!
The thought was unthinkable, and they had to live with it.
I could also see that my parents-in-law wanted to overcome the challenges of our illness together with us but also respected our independence as adults.
It was quite an adjustment for them, too.
With all this, I can tell you that we are suffering greatly.
I have seen the consequences of our illness on the people around us.
And I could not do everything I wanted to do to support them.
What really helped was the communication between us.
The presence we gave each other and the love that surrounded us all.
My experience with the disease has made me aware how important it is to connect with my core values and examine my priorities so that my life has meaning for me.
I also felt the need to convey to my loved ones. How important it is to align one's life with one's values.
This is how we rebuild our world together. A world in which light always has its place and becomes a source of HOPE.
Male Spouse - 8 December 2020 - Multiple Sclerosis
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Female Spouse - 27 May 2024 - Irritable Bowel Syndrome
Female Spouse - 18 June 2024 - Dysautonomia
Female Spouse - 5 July 2024 - Inappropriate Sinus Tachycardia
Female Spouse - 24 July 2024 - Tietze Syndrome
Living With An Incurable Disease
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