Did you read our collection of letters that people with diabetes have written to their diabetes? Writing directly to “their” diabetes they share what’s on their mind.
Here you will find Bjarne’s letter to diabetes. It’s truly worth a read.
Written by Bjarne Ledet Larsen
My name is Bjarne, I’m a so-called type 3, also known as a carer. I’m a dad to 17-year-old Vitus. He has diabetes type 1. He was diagnosed when he was two years old in 2005.
I´m sitting here in Svendborg, Denmark, watching the last rays of sunlight falling upon the Svendborgsund Bridge, while I think about the post that Hedia kindly asked me to write for their blog.
The theme is: write a letter to your diabetes. The aim is to shed light on the emotional aspects of living with diabetes. Oh yes, there’s plenty to write about. But writing it is immediately harder. To make matters worse, Signe from Hedia asked me if I could formulate the subject in 5 to 15 lines. No, God knows I can´t.
Honestly, I was a bit offended to have my emotional life decimated to 15 lines. I didn’t have the energy to tell Signe. Telling her would possibly implicate an explanation, and I don’t always have the energy to explain.
That’s one of the side effects of living with diabetes. You spend a lot of time explaining to people what diabetes is, what it’s like to live with diabetes, how much work it is, what it does to your family etc.
Like many other people living with diabetes, you develop “Explainitis”, a well-known imaginary disease among PWD (People With Diabetes).
If you tell someone that my kid has a pump, and their first reply is “oh great”, then it means that they think the pump just runs by itself without any manual work.
At this point, a conversation with yourself automatically starts up in your head. It’s pros and cons. Is this person worth the explanation of my truth about diabetes? Will this person have the patience to listen? Is there a chance that this person will understand? Is this person sharply perceptive and can he or she read between the lines? etc.
This is a situation I find myself in often, and since I have been trying to explain for almost 15 years, I´m pretty sharp when it comes to seeing through people and deciding whether they´re polite, stupid, know-it-alls or really interested in learning about diabetes.
By listening and talking to people in the diabetes community in Denmark and around the world, it’s clear that this problem is the same all over the world. PWD run daily into the wall of ignorance.
There is not enough knowledge about diabetes. Many people don´t know the difference between type 1 diabetes and type 2 diabetes.
There are all kinds of crazy theories about why people get type 1 diabetes. The fact is that no one knows why people get type 1 diabetes. And because of this lack of knowledge, PWD, get confronted on a daily basis with all kinds of crazy questions and theories. This wears them down.
They get exhausted. They feel that no one understands them. Diabetes burn-out is a common condition amongst PWD. It has severe consequences for them and their families, and “explainitis” is just one of the factors that affects PWD psychologically and emotionally.
But what is it that makes it emotionally challenging for me? What are the aspects of living with diabetes that have an influence on the rest of my life, and in that way also has an emotional influence on my life in general?
First and foremost, for me, it has been that my child has a chronic disease, from which he can die, if I don’t care for him. That’s a big responsibility and I have to bear it 24/7. It’s important to say that type 1 diabetes is experienced differently.
Why? Because people are different, and because diabetes unfolds in thousands of different ways. Some find it easy to regulate their blood sugar. Others struggle. Others again find it almost impossible. Some are allergic to the adhesive that your pump or sensor uses.
Some people don’t feel getting low, others feel a low blood sugar right away. Everything about diabetes is very different from person to person. This is what many people don’t understand.
And that’s maybe one of the big issues when you´re living with diabetes: that you don’t feel understood; that you sometimes feel mentally isolated.
Existentially, as human beings, we have a basic desire to understand and for being understood. Understanding is a psychological handshake, a mental knot being tied between two people.
A lot of people get depressed from not being understood; from not being able to create a compassionate connection to another human being founded on communication and understanding.
This is why PWD are twice as likely to develop anxiety or depression, compared to people without a chronic disease.
For me, as a parent, another big factor has been dealing with school, school staff, teachers, and headmasters. This has been a huge emotional burden and challenge.
The difference between meeting people in your leisure time and meeting people as professionals, such as teachers and headmasters, is that in school, you can’t choose not to deal with them. School is compulsory, and you can´t be sure to get teachers that meet you where you are exactly at that point in your life. You will meet teachers that are very single-minded and rigid in their approach.
You will meet school staff that will have nothing to do with your kid because they don’t feel it’s their job to “do diabetes”. You will meet headmasters that will do everything to fit you and your kid into a statistical average, otherwise they are convinced they are unable to help.
Helping kids with diabetes is all about approach and mental attitude. It’s about expecting the unexpected. It’s about being forgiving, it’s about convincing the kid that you have the responsibility, that it’s not the kids fault, that blood sugar is uncontrollable, it’s about how you reassure the family that you understand these things and that you take charge and responsibility.
This field is enormous. It’s 9 or 10 years where you are forced to deal with a trillion different problems, physical as well as mental. It takes a supernatural effort in the art of diplomacy.
Countless are the times I have been biting my finger while counting to ten, in an attempt not to explode with a catastrophic aftermath to follow.
Luckily for me, my better half is very diplomatic and an expert in “smoothing” the dialogue when she feels the seismic vibrations from my chair. That’s another thing. It’s really good to be a team of two parents dealing with your child’s diabetes.
We have an unspoken agreement that only one of us can be down at a time. So, if one of us is just fed up with everything and really needs a break, the other one must be strong and hold the fort.
I don’t know how single parents do it, but they have my utmost respect and sympathy.
I have only mentioned explaining diabetes, and school and diabetes as a couple of the factors that can have an impact on your mental wellbeing, as well as your emotional balance.
Just for the fun of it, let me mention a couple more, without going into any details about it: communication with the municipality about funding the right diabetes aiding tools (huge issue); sleep deficit – many parents to kids with diabetes type 1 haven’t had a full night’s sleep for many years; using nature as place to recover from emotional stress; plus, many more.
Let me finish by saying that I hope the people in the health system – who actually get paid to help PWD – start listening to PWD. For PWD and their relatives, it’s all about getting meaningful context into their life.
Existential meaning is when everything falls into place without any dead ends on the way. When things in your life don’t work – for instance diabetes-related things – or don’t make sense, they are an attack on your mental wellbeing.
Existential meaning with existence is what umami is for the chef. Let’s get some more umami for the soul.