By Síofra Kelleher
A lot of people would assume I would remember the day I was diagnosed with Type One Diabetes like it was yesterday, but to be honest, I don’t. I remember the feeling. Type One Diabetes has four main symptoms, abbreviated to TEST. Thirst, Energy reduced, Sudden weight change, Toilet trips increased. I presented with all of these symptoms. I remember feeling like I couldn’t even sit up straight on a chair, and I was terrified. By the time I was admitted to hospital, my HBA1C was 14%(119mmol/mol) and I was extremely underweight.
When the doctor told me I had diabetes and my pancreas couldn’t produce insulin anymore, my first question was “what’s a pancreas?’.
“What’s a pancreas?”
Very quickly I found out what a pancreas was and more. My week in the hospital was spent readily learning how to count carbohydrates, adjust insulin doses and learning how to inject into an orange. I gave myself my second dose of insulin ever, in fact I refused to let anyone else do it afterwards. Type One Diabetes was like a silent encroaching fog, I still believed deep down that when I left the hospital it would all return back to normal. I remember being so relieved to go back to my childhood home, in the shock of my diagnosis I had forgotten what our hallway looked like. But then the rollercoaster of blood sugar management began and I was left wondering “what am I supposed to do now?”.
The New Normal
I consider myself lucky. My diabetes care team in Sligo University Hospital were a godsend. I saw them every 1-2 weeks in the first 8 months of diagnosis. They always were truthful and upfront about the realities of T1D to me, despite my young age. My endocrinologist told me while I was in the hospital that there was “no such thing as a diabetes holiday” – a day with no diabetes. I have carried this with me ever since, and I believe it has helped me to keep taking my insulin, even during the height of diabetes burnout.
However, despite the efforts of my Sligo team, my diabetes was classed as “brittle”, an outdated and harmful term for unpredictable and uncontrolled blood sugars. It was clear due to my lack of hypo awareness and need for minute doses of insulin that I required an insulin pump. However, due to the unavailability of insulin pump care in Ireland, I had to switch hospitals.
The Journey to Obtaining an Insulin Pump
I started attending the leading Children’s Diabetes clinic in Ireland in Crumlin Hospital in 2010 and attended appointments every 3 months for 5 years. At the same time, I attended Sligo University Hospital’s Diabetes Clinic every month. This had put me and my family in the tough position of travelling the 3 and a half hours to Dublin every few months. These clinic visits could take hours and were highly stressful. I was very anxious about being deemed suitable enough to receive an insulin pump. In Ireland, patients must meet certain requirements to receive an insulin pump, and even then you were placed on an invisible ‘list’ and could be waiting for years for an insulin pump. In the meantime, I was trying to manage my diabetes with 5 pen injections a day, testing my blood sugar manually on average 10 times a day. That year alone, I spent more days off school than I did in school.
Other Aspects of Life
What is often not spoken about is the impact of diabetes on other aspects of life. My diabetes required so much of my time and my parents time. I have other siblings who had to adapt to this new attention given to me and understand. I had also started a new primary school after diagnosis, and had to adapt to a new social environment with my chronic illness. I rapidly learned how differently you were treated when you have a chronic illness and how to react to discrimination. The amount of time spent attending clinic also barred me from attending extracurriculars and social events, like birthday parties.
Still, 13 years later I consider myself lucky. I was given an insulin pump and continuous glucose monitor in 2011, exactly 1 year after diagnosis. While not perfect, this made a huge difference and I believe it saved my life. Modern technology, like a suspend on low feature saved me from potentially fatal night time hypos. However, my aim in my advocacy work is to make sure no child with diabetes has to go through what I did. All people with diabetes deserve the access to care they need, not just what is adequate.
Disclaimer: the opinions – including possible policy recommendations – expressed in the article are those of the author and do not necessarily represent the views or opinions of EPHA or our members. The mere appearance of the articles on the EPHA website does not mean an endorsement by EPHA.