My Journey with Type 1 Diabetes: From Diagnosis to Advocacy
In October 2018, my life took an unexpected turn when I was diagnosed with Type 1 Diabetes. Initially, I felt isolated, as if I was the only person in the world facing this chronic illness. The sense of being alone was exacerbated by the local diabetes association in Iceland, which was then called "Association for the Sugar Sick." The name felt stigmatizing and outdated to me. After some thought, I decided to act and contacted the organization to suggest a name change. It was a small step, but a significant one, and in 2022, the association was renamed to "Diabetes Iceland," a change that felt more respectful and inclusive.
My Advocacy Journey
My advocacy journey began to take shape in 2023 when I joined the board of Diabetes Iceland. This new role opened doors for me to make a difference in the diabetes community. In July of the same year, I had the opportunity to attend the IDF Europe Youth Leadership Lab on behalf of the association. It was an eye-opening experience where I finally met others living with Type 1 Diabetes who shared a passion for advocacy. This experience was transformative.
“For the first time, I felt part of a larger community dedicated to making life better for people with diabetes.”
At the leadership lab, I was introduced to #dedoc°, an international network of diabetes advocates. With their support, I attended a diabetes conference virtually and then two in-person conferences. These events were incredibly educational and inspiring. I learned so much about the latest advancements in diabetes care, innovative advocacy strategies, and the power of a united community. Meeting individuals who had made substantial impacts in their communities, advocating for better care, understanding, and support for people with diabetes, further motivated me to deepen my commitment to advocacy.
A New Role
In July 2024, I returned to the IDF Youth Leadership Lab, this time as a mentor. It was a full-circle moment, allowing me to guide and inspire the next generation of advocates. I shared my experiences and the lessons I had learned, emphasizing the importance of local and European-level advocacy. Being a mentor was a rewarding experience; it felt empowering to help others find their voice and make a difference.
Looking back... and ahead
As I reflect on my journey, I realize how far I've come from feeling isolated to becoming an advocate and mentor. The conferences with #dedoc° and the IDF Europe camp taught me invaluable lessons and connected me with a global network of passionate advocates. It's a testament to the power of community and the importance of speaking up. My advocacy journey has just begun, and I am excited about the future contributions I can make to the diabetes community. The path ahead is full of possibilities, and I am eager to continue working towards a better understanding and support for all who live with Type 1 Diabetes.
Finding Your Way — and Your Voice
Whether you’re newly diagnosed with T1D or ready to step into advocacy — you are not alone. It’s normal to feel overwhelmed at first; adjusting takes time. Reach out, ask questions, and connect with others who truly understand what you're going through. There’s a whole community out there ready to walk with you on this journey.
If you feel called to do more, start with your story — it’s powerful. Get involved with local or international communities like your diabetes association, IDF, or #dedoc°. You don’t need to have all the answers, just the passion and heart to make a difference. Your voice matters — it can inspire, create change, and help others feel seen.
Written by Kristinn Ingi Reynisson
#Advocacy #YouAreNotAlone #Diabesties #Dedoc #IDFeurope #Yourah
