TW: mention of blood, needles, mental health, abuse, death
DISCLAIMER: I’m not a professional health adviser, thus the posts should not be used for a diagnosis. Every person that has been interviewed for this project shares their own personal stories. If you have any worries concerning your own health, you should consult with a doctor.
In the year of my AS studies in May 2018, just after I got back from a school trip to Italy, I was sitting with some friends at a coffee shop. I had a bad cold. My throat was sore, and my voice was not more than a cracked whisper. Still, I left my room and couch potato self behind to enjoy the sunny day with my friends.
After a while, one of my peers from school, that I have briefly met before, asked me about the ‘Walkman’ that is attached to my hip – he meant my insulin pump. “I have diabetes.”, I told him. His puzzled look confirmed my assumption that he had absolutely no clue what diabetes was. Maybe it was quite mean of me to crack a joke with my faint, whisper voice as I said, “I can’t photosynthesise properly.” but I would have never thought that he would believe me. Don’t get me wrong, biology isn’t everyone’s cup of tea, but it was at that moment, I realised that he wasn’t the one to blame for the lack of understanding society has towards diabetes mellitus as a whole.
I have always been open with sharing my story, but I can’t count how often I had to explain to people that I did not get diabetes by eating too many sweets. The truth is, diabetics need sugar as much as everyone else does to live.
It started in third grade, nine-year-old me on a hospital bed, surrounded by her loving parents that cried into each other’s arms. Nine-year-old me had no clue what exactly was happening. I have never seen my mum and dad that sad before. “Am I dying?“ was the first thing that crossed my mind. The answer: yes and no. I would have died, but I got the diagnosis in time—diabetes mellitus type one. Sounds quite nasty, doesn’t it?
Diabetes comes from the Ancient Greek word for “passing through” and refers to a large amount of urine. Mellitus deprives from the Latin meaning “as sweet as honey”. In other words, diabetes mellitus combined means sweet urine. This actually describes one of the key symptoms of this disease. In the past, doctors tasted their patient’s urine to test if they have diabetes. Now that most definitely sounds nasty. If the urine was sweet, it would have been a death sentence for that person back then. Many different therapy methods were used to treat people with diabetes but one thing was still missing and it’s a hormone called insulin.
Insulin is produced in your pancreas and acts as a key to open up the muscle cells to guide the carbohydrates from your food through in order to make energy. Without insulin, the carbohydrates remain in your blood, and that is toxic for your body which will eventually lead to death. Diabetes is a game of balancing. The glucose levels should not reach hyperglycaemia (high blood sugar) or hypoglycaemia (low blood sugar). For diabetics, insulin needs to be injected externally by needle or, in my case, with an insulin pump.
The hormone that is used nowadays was discovered in the 1930s. Before that, insulin from the pancreas of pigs was used as it is pretty similar to a human’s insulin. However, the early version of insulin was often contaminated and not a long-term solution. It is safe to say that I feel lucky in an unlucky fate to live in our modern world of technology and medical treatments.
I spent the summer of 2010 drinking my body weight in water while losing a lot of weight. I was a chubby child, and losing weight wasn’t really my top priority as I loved ice cream and chocolate way too much. But, this was not the reason for my health problems.
The people in school used the disease as another reason to make me feel worthless. Even the parents of my “friends” made comments that still make me tear up. I was not invited to any birthday parties because I would, as those parents pointed out, “ruin the mood by not eating cake”. Children and adults mentally abused me. Nothing excuses this, and there is no way I’m leaving this out in my story. It is not my fault that I got type one diabetes, and it is crucial to raise awareness and talk about the lack of understanding.
Diabetes is also known as “sugar disease” – is that the reason people believe that eating too many sweets causes it? Or is it because the differences between type one diabetes and type two diabetes are unclear?
When the doctor explained to me in a “child-friendly” way what diabetes was, he mentioned, “It’s what your grandmother has, but different.” My grandparents have type two diabetes, and although it affects your diet and insulin production, it is not the same as type one. First of all, it is more common, and mostly older people and individuals that lack physical activity and have a bad diet are at risk. The cause of diabetes type two is insulin resistance. The body does not normally respond to the essential hormone, and the pancreas tries to act against that by producing more insulin. The glucose levels in the blood remain high, and treatment is needed.
No one really knows how and why I got diabetes type one. Often, it is inherited, but no family member has type one diabetes. It remains a mystery to me and doctors as well.
“I kind of look like a cyborg.” is my introduction to my different treatment gadgets. From tubes to transmitters, modern technology makes the monitoring of glucose levels more accessible. I don’t have to prick my finger as often as I used to as a child. My fingertips were full of scars because I had to measure a droplet of blood before every meal. Nowadays, a transmitter, a smartphone and the Freestyle Libre App go hand in hand. The result: continuous checking.
I used to be scared that my life would depend on computers. Computers make mistakes. I would face the consequences of these mistakes. But over time, my body would alarm me if there is something wrong; although the phone screen would say otherwise. That’s rarely the case. When my blood sugar is low, my body starts to shiver, and I can’t concentrate anymore. I feel hot and cold at the same time, and I crave food much more. It’s not a feeling of hunger but a desire to just grab the next carbohydrate-rich food and stuff it in my mouth. I can kind of relate to the cheesy vampire shows where the vampires smell blood and go all crazy – that’s me just with food at that moment. It’s a mechanism that doesn’t require your thinking.
One of the many things I have learned is that diabetes is a part of me, but it doesn’t define who I am. Despite my health issue, I was able to travel, study and continue to live life to its fullest. Luckily, people do not respond as poorly to my diabetes as I was used to as a child, and many show great interest. I have recently seen people with diabetes on TikTok, showing how the transmitter is injected correctly and also explain the myths behind the disease. It is essential to continue to raise awareness, and I don’t want another child to be in a similar situation and be attacked for something they are not responsible for.
SOURCES https://www.canr.msu.edu/news/how_diabetes_got_its_name https://www.cdc.gov/diabetes/basics/type2.html There aren't many sources as I wrote this article from my own knowledge and history. If there is anything that you don't agree with, please let me know.