Liliana Kuprowska shares her insight of living with a sibling who has Type 1 diabetes, whilst challenging some of the stereotypes and common areas of misunderstanding around the condition. She feels the next big step is to educate and raise awareness to support patients like her own brother to pursue their passions and hobbies; even if it means taking on the International Tennis Federation!

Most people hear the word “diabetes” and instantly think “overweight” or “unhealthy”. Right? I don’t blame you. The stereotypes around this illness are built very firmly within society. Same with many illnesses. Well I am writing this to help you understand the truth. The unseen and the unanticipated. 

Back in June of 2019 my younger brother, Maksym, was diagnosed with Type 1 Diabetes. I have seen him go through things that no one should. When my brother was diagnosed he was already in DKA (Diabetic Ketoacidosis). When a Type 1 Diabetic is untreated and has a high blood sugar for a long time then the physiological response is for the body to produce ketones. Ketones are made to provide energy when there is none available and a build of ketones can be toxic. They can slowly poison your bloodstream and make your blood acidic. Your organs cannot survive with acidic blood and so all of your organs slowly start to shut down. Thankfully, none of my brother’s organs had gotten to the point where they had completely failed but they were slowly shutting down. 

This goes out to all the people who have a sick sibling. Like me. We see the side so many people do not have to see. However, one thing in particular that I would like to point out about being a sibling is how desensitised we become to it all. It actually took me a few years to realise how unphased I became as all of it slowly became my “normal”. One day it hit me and I finally became so extremely lucid. It was when my brother was getting his insulin injection for dinner. Nothing out of the ordinary; I have only seen it at least 15,000 times by now. No clue what it was about that specific moment but I thought about how this is not everyone else’s daily routine, which I know sounds like a really blatant and obvious point, some people are blessed with health. I do not take health for granted, however my brother is my best friend and I would swap and have Type 1 Diabetes myself in a heartbeat. I remember the first few weeks after my brother got diagnosed. I cried a lot, it was a lot for me to take so I could not even imagine what he must have been feeling. I will never forget when I was upset and crying and I got sent to the canteen to talk with a teacher. I sat and we talked and he offered me a kitkat bar. I remember everything feeling a bit lighter after that. Thank you Mr. L 🙂

Now I know the best person to write this part would be my brother but I will give it my best shot. My brother’s side is the side that not many people see and the side only he experiences. Not many people are aware about the little bruises from all the injections or the scarred fingers from the finger pricks to check blood sugar levels. My mum has not gotten a full night sleep ever since he was diagnosed. Either to check his blood sugar or he needs insulin or glucose. But we still have people saying that it “can’t be that bad”. Sometimes people think that he will get used to it or that he already has because it has been 4 years. My brother absolutely detests changing his Dexcom (blood sugar monitoring device) which he changes every 10 days. But it is not just the medical side of this illness that he has to deal with. It is the social side, his friends not inviting him to birthday parties, being told he cannot do this because ‘he is going to die’. Sadly, it is not just his classmates he has to deal with but even his teachers! Telling him he cannot do things because he is diabetic, things that he 100% CAN do! Or some of the trained diabetes team at school letting him down. I am very grateful for the ones who take amazing care of him, I will be forever grateful. But the ones who didn’t ruined his trust a lot. 

Now time for my favourite story. Funny or unfunny depends on your point of view but in my view, absolutely hilarious. Me and my mum walked past a sweet shop once and we could not help but notice that there were two big shelves labelled “Sugar Free”. We thought it would be nice to get Maksym some sugar free sweets so we went inside to see what they had. Although, sugar free sweets usually have sweeteners and some sweeteners are not the best for your stomach. So my mum asked the shopkeeper if he could pass us the jar of sweets so that we could check the sweeteners. Guess what the first ingredient was… It was glucose. My mum then tells the shopkeeper that glucose is quite literally sugar and that these sweets are not “sugar free”. He proceeds to explain to us that glucose is not sugar! Or like he said “not in my book it’s not.” We were speechless, however I did get a very good laugh out of that once we left. Imagine if a diabetic bought these sweets without checking the ingredients! That would not have ended well. 

I would like to briefly explain a few things about what Type 1 Diabetes actually is and how it works. Type 1 Diabetes is a chronic (always going to be there) and autoimmune (the body’s immune system is attacking a body part thinking it is harmful when it’s not) condition. The body’s immune system attacks the Islet cells on the pancreas (the cells that produce Insulin) from producing Insulin. Insulin is a hormone which is essential to maintain a good blood sugar level. This is because when you eat your blood sugar rises and you start to produce Insulin, then the Insulin transports the sugar from the blood to your muscles and other parts of your body so that you can use it for energy. However bear in mind that this is different from Type 2 Diabetes. Type 2 diabetes is when your pancreas does still work however your body does not recognise the Insulin that is being produced so it also makes it hard to keep your blood sugar levels good. Going back to Type 1, this is why when a Type 1 Diabetic’s blood sugar is high or before they eat they have to take an Insulin injection. When their blood sugar is low they eat something. The best would be not to eat complex carbohydrates for example because they would take hours to break down into glucose. Instead it is better to eat simple glucose which will act much faster like Glucotabs or juice. The main symptoms of Type 1 Diabetes are going to the toilet very frequently (because your blood sugar is most likely high and your body tries to get rid of the sugar in any way it can). Also drinking an abnormal amount of liquids daily and being thirsty all the time, getting tired very quickly, muscle weakness and cyanosis on the lips (blue lips). 

I understand that not everyone can be aware of every single illness because that is almost impossible if you do not go to medical school, however please have some common sense. I know I am his sister but I promise I am not being biased, Maksym is an extremely talented tennis player. He wants to be like Iga Swiatek when he grows up! This is why it was very upsetting when we read about Alexander Zverev. Alex is a Type 1 Diabetic tennis player and it was while he was playing at the French Open earlier this year when something unbelievable happened. They said that he cannot do his Insulin injections on the court because it looks like he is “taking drugs” and that if he needs it then a doctor needs to do it for him! Excuse me! I am just going to leave it at that…

So, the next big step is to educate! It is one step closer to my brother and millions of others being understood instead of having to deal with being left out. 

“Diabetes is hard to live with but I try to think about all the positives, like being able to cut queues.”

– My little brother, Maksym, 10, “almost 11!”, he adds.