To become ill
When you become ill life changes. Often in a dramatic way.
- How am I going to manage? – Who can help me?
- Will I die?
We are born to live. We want to live our lives.
It was right after my sixteenth birthday that I got type 1 diabetes. In my diary I wrote “Death became my first boyfriend. He waits for me. He is always there, faithful”
The pediatrician that informed me about the diagnosis was probably only meaning well when he said ”You have type 1 diabetes! You will have to have injections every day for the rest of your life. But don’t worry, I know an elite athlete that has been living with diabetes for many years. You will be fine!”
I was not fine.
It was chaos. I did not understand anything about all the strange things I had to go through because of my illness. And no one explained it to me.
I was fumbling. Alone. Low blood sugar and hypoglycemia caused me to time and time again wake up in intensive care. The physicians warned me: “You almost died again!”
I didn’t understand – I did not want to understand and I was not able to understand.
I received no information about psychological reactions in connection with my diagnosis.
The hospital staff was concentrating on the medical side of it: ”It is easy! Just check your blood sugar. Take tests! Measure, analyze and act and everything is going to be fine!”
The beginning of my illness was a pitch black, incomprehensible experience. The following years were a fight for my life. No one managed to see or acknowledge what I was going through. I was so young! I looked so strong and healthy! Was it possible that I could be unhappy or want to die?
To me death was more real than life. And with death by my side there was worry, anxiety, pain and grief.
I was suffering from long and deep depressions and started to doubt my own ability.
After soon 38 years with extremely difficult to control type 1 diabetes and many near death experiences I have a good life. I realize that it is in part thanks to fantastic care efforts, but also because of my own fight for a decent life –in spite of serious illness.
What could have been done in a better way?
”Health care” probably meant well. But my feeling of lost health and my traumatic experience of illness was not adjusted to the care that was offered to me as “newly diagnosed with type 1 diabetes”. Different worlds met – we did not speak the same language. We were living in different cultures. We did not see or hear each other.
Today, with a little perspective, I know that a lot could and can be done better. To help and care in the best possible way is a complex and challenging task. And it is vital. That is why medical science, ”healthcare” and our possibility to help in the best way always are worth our strongest commitment.
EVERYONE will - one day - get weak, sick and old. That’s life.
Every time someone is diagnosed, the person stricken by illness should be guided, in a careful and perceptive way, to learn to live with the illness. The ability to live an as full and good life as possible is sadly not provided for the way the healthcare is organized today.
When I met people working with person-centred care - PCC- was happy and inspired. PCC is based on a hypothesis that may seem obvious: That the care always has to be focused on the person who is suffering from illness; the person, the individual that has to live with totally new challenges in her life.
But sadly, that is not how it works.
We who have lived for a long time with illness know this. We hardly ever share our experiences with anyone, because who would want to hear about how complicated it can be to go to the bathroom, about how I would rather die, or how much it really hurts? A unique experience. A lonely fight. During my long stays at hospitals I have heard other patients/persons tell their stories. Our conversations are intimate and personal because we have experiences in common and knowledge about how challenging it is to live with illness. To meet other patients/persons with experience of serious illness often is the best route to insight and empowerment.
To survive we have been forced to develop a courage to live that is hard to surpass.
Despite this we need help.
That is not strange at all, because everyone does. Sooner or later.
There are some things I think about after a life with serious illness and the forced existential exile that illness brings. There are a lot of things we could improve for everyone in the big and complex healthcare organization. We have to focus on better care for everyone:
- Ask me – an individual, a person with resources – about who I am and how I understand.
- Ask me how I feel and about my experience.
- Let me be involved as much as possible - let me see you - and see me. We have to work together without prestige to better treat my illness/me.
- See me as an intelligent person who can teach you a lot.
- Inform me, be generous with your knowledge – and I will be generous with all I know and have experienced. Together we are stronger.
- Ask what I want or need to do to feel as well as possible.
- Ask what you can do – and what you CAN’T as a physician, nurse, healthcare staff. We have to acquire a language we can understand together.
If I understand correctly, PCC – person centred care – this view is about everyone’s equal right to life. A good life. A rich, interesting, stimulating, fun, demanding life, in the same way that life can be if you are healthy.
If we are to live on the earth together for a while we should consider our shared experiences in the art of being human.
Person centred care is about taking back this perspective. About the art of being human in healthcare, in society and on the earth. As a physician, nurse, relative or patient/person. As a human with a love of life.
In the big, unwieldy, bureaucratic and according to politicians extremely expensive ”care” this sadly does not work very well. The most important task for politicians, economists, buraeucrats, hospital directors and others have in front of them is:
Life itself. A good, rich life despite of the vulnerability all humans sooner or later will experience.
Exactly as it is and always has been with all people: infants, schoolchildren, teenagers, mothers fathers, refugees, ill, healthy, fathers, old, heroes and gangsters etc. Everyone is a person with resources.
I cannot define life in economic terms. I know that quality, humanity and solidarity save lives and build a society that is more humane.
That is how we have to think – that life costs and that it is worth it to spend money on caring for life. Many small and big challenges need to be addressed before a more human care for everyone can function.
If I could have met an ”emergency philosopher” to discuss all my new, complex existential questions with when I had just become ill as a young person, maybe that would have made it easier to live with a chronical illness. I needed to learn a new way of looking at things, that up until then I was taking for granted. I was so young and did not want to be ill. I did not understand the meaning of life anymore.
In Norway I think “emergency philosophers” actually exist – maybe we should try that here too?
Text and illustration (above): Malin Högberg