DSA YT1 Youth Warrior Children’s and Youth Outreach volunteer, Shelly Schutte, shares how she came to see diabetes as her superpower and not her disability.

Shelly Schutte (29) lives in Fish Hoek, Cape Town. She has Type 1 diabetes.

I grew up in an outdoorsy family. My childhood was filled with running, hiking and playing sport. Even if I wasn’t the most gifted at it! I was a healthy, active child with a healthy, active family, and I still got diabetes.

Despite what well meaning textbooks or radio shows often describe, diabetes (especially Type 1) doesn’t only affect people who struggle with weight or health issues. It can affect anyone, and more importantly, you don’t sacrifice everything you were before when you became a ‘diabetic.’

Diagnosis

In early February 2001, I started feeling…off. My thoughts began wandering more often in school and weight started dropping off me. Fast forward a week or two and an intense thirst began to burn in me all day. No matter how much I drank, I could not seem to fill up the desert inside. What goes in must come out. So, I visited the bathroom multiple times an hour.

This period is foggy in my mind. But one of the most vivid memories I have is the night I slept over at my best friend’s house. I was thirsty. So, thirsty in fact, that I went to her fridge, grabbed a 2L bottle of apple juice, and just chugged it. I was exhausted and feeling ill but also not sleepy. So, I stayed up chatting to her dad (who was sitting trying to work) long after my friend went to bed. She still teases me about this to this day.

The next day my parents and I began to realise that the gradually increasing tiredness, nausea, thirst and weight loss couldn’t just be chalked up to a nagging flu anymore. There must be something more.

My mother took me to my GP, who took one look at me and did a blood glucose test. He later told me he smelled the fruity odour of ketoacidosis the minute I walked through the door.

My blood glucose level was 22,9. No doubt about that: T1 diabetes. He booked me into hospital and by the time I arrived that evening, my blood glucose level was 44. I was doubled over with pain and nausea. When ketoacidosis hits, it hits hard.

The start of acceptance

The next few days were a bit of a whirlwind of pulling me out of ketoacidosis, getting my glucose stabilised, working out insulin doses and meeting the amazing Sister Stark. She made me realise that there was a road of learning ahead, and she would be with me on that road.

I was so grateful to not feel sick at first that I was not actually upset about the diagnosis. However, I was determined to learn to inject myself . I overheard the nurse telling my mom that it was one of the conditions of my discharge from hospital. I really wanted to be out by the weekend so I could still go to church camp!

About three days into my hospital stay, I remember asking my mom how long I would have to inject myself for. She very kindly and gently gave it to me straight, until a cure was found. And that’s when it hit me. This was going to be something that would be a part of me for the rest of my life. I have cried many times about having diabetes over the years and that day was the first time I felt that pain. But it was also the start of acceptance.

I did go to the church camp that weekend, carrying a humorously enormous box of syringes, insulin, glucogel, glucagon injections and information packets. It was not the same as it had always been as people didn’t know how to treat me at first. But, gradually they began to see I was the same person. Just with a lot more needles in tow and a tendency to not be phased by blood anymore.

The many hates

Diabetes is not an easy condition to have as a child, teenager or adult. For a long time, I hated diabetes. It was blamed for me feeling tired and lethargic when my friends would have energy for days. I hated having inappropriately-timed lows that disrupted or delayed plans. I hated having to eat a certain way, or sometimes, having people question why I didn’t eat a certain way! But most of all, I hated the planning. 

Even today, if I ever jump into spontaneous plans, I realise at some point that I need to leave early because I don’t have my overnight insulin on me. This is just one example of the many ways that Type 1 diabetic patients need to plan their daily lives.

A force for positiveness

It was only when I started realising that diabetes could be a force for positiveness in my life that I truly began to see it as a gift. And really, in many ways it has been.

It led me towards teaching and advocating for others as a career. It has allowed me to meet some of the most awesome people imaginable. And now, I belong to a global community of fascinating, intelligent, strong, powerful individuals who are doing great things to change the world’s perception of chronic conditions and invisible disability.

I belong in this community. I am one of these people because of the journey I am on and the 20-year path with diabetes I have walked.

Slightly out of tune but better for it

People with diabetes are not sick. We are not diseased. We are just slightly…out of tune. My brain, pancreas and immune system do not do what they should, in terms of opening my cells and letting the glucose flood in automatically when I eat. So, I must help.

I calculate the carbs and inject the insulin and along the way, become highly attuned to how my body feels in every variation of high, low, rising, falling, normal tired, low tired, high tired, low moody, high moody, high thirsty, low shaky and so on.

I make a hundred decisions every day to keep myself alive and to keep myself healthy. And because of that, I am stronger, calmer under pressure, more empathetic and more analytical than I ever would have been without diabetes.

I have travelled the world for work and play with diabetes and continue to look forward to the many opportunities my future holds. Diabetes is difficult but it can be your superpower, instead of your disability. I have been involved in diabetes advocacy for many years and so excited to now be a part of Diabetes South Africa: YT1, which aims to bring T1 diabetes youth together to learn from and support one another.