Listen to the audio version of this article.
When we first suggested the theme for an online open dialogue for advocates and members of the International Diabetes Federation (IDF) that goes to the heart of the lived experience of diabetes complications, I had no idea how much it would resonate or how deeply it would move me.
As both the host and someone personally affected by diabetes complications, I came into the space with the hope of opening up an honest conversation. What I witnessed was far more powerful: an outpouring of courage, vulnerability, frustration and resilience from 48 people who knew exactly what it means to live with these invisible burdens. Together, we didn’t just talk, we shared experiences that rarely make it into clinical conversations.
What I witnessed was far more powerful: an outpouring of courage, vulnerability, frustration and resilience from 48 people who knew exactly what it means to live with these invisible burdens.
Living with diabetes is already a daily commitment. But when complications set in—neuropathy, retinopathy, cardiovascular issues—the physical and emotional weight increases exponentially. The participants described how even routine tasks can be overwhelming. For one participant who could no longer walk comfortably due to neuropathy, it meant giving up work and losing social connections. For another, the slow, terrifying onset of vision loss due to retinopathy created a constant sense of fear. They were terrified they would go blind before anyone took them seriously.
These are not isolated experiences. They are part of a pattern: complications that aren’t just physical, but deeply disruptive to daily life, self-esteem, independence and emotional well-being.
One thing that stood out was how heavy the emotional load of diabetes complications really is. Common emotions are anxiety, fear, guilt and the relentless pressure of managing a condition that doesn’t go away. Someone put it perfectly: “Managing blood sugar is one thing. But dealing with complications feels like a full-time job on top of that”.
What I heard from so many echoed my own experience: that distress, depression and emotional fatigue are ever-present. Yet our healthcare systems aren’t built to help us cope with that side of diabetes.
Managing blood sugar is one thing. But dealing with complications feels like a full-time job on top of that
Another strongly discussed topic was the challenge of accessing timely, regular and coordinated care. It really depends on where you live. Seeing a specialist or getting the correct screening can feel like an uphill battle. For people in rural or under-resourced areas, the situation is even more difficult. Not only can these systemic issues delay care, but they can also leave people feeling isolated and ignored.
We also talked a lot about education. Too often, people are told how to manage their blood glucose but are given little to no information about what complications might look like or how to catch them early. Many of us had to educate ourselves through trial and error—something that shouldn’t still be happening in 2025.
There was a clear call for comprehensive, accessible education that includes not just blood glucose management, but also guidance on screening, lifestyle interventions, emotional well-being and prevention of complications.
Many of us had to educate ourselves through trial and error—something that shouldn’t still be happening in 2025.
Some of the most powerful contributions came from women who had experienced pregnancy while living with diabetes complications. The sense of isolation was palpable. “I felt completely alone during my pregnancy,” one woman said. “No one seemed to understand what I was going through, not even my doctors”.
Others described being overwhelmed by information they had to seek out themselves, often without emotional support. This pointed to a need for more compassionate, informed and tailored care for women navigating diabetes and pregnancy.
One person spoke about the confusion and mourning she felt after her diagnosis, unsure whether motherhood was still within reach.
We didn’t just talk about the problems, we also imagined what better could look like. Here’s what we collectively called for:
These aren’t just “nice to haves”. They’re essential.
Hosting this Open Dialogue was a reminder that when we speak honestly, change becomes possible. The stories we shared are not rare—they’re just rarely heard.
If you’re reading this and you live with diabetes or support someone who does, I invite you to join this conversation.
What have you experienced? What helped you? And what else should we be doing to support people living with complications?
Let’s keep talking. Let’s keep pushing for systems that see the whole person—not just the numbers. And let’s keep building a future where living with diabetes complications doesn’t mean doing it alone.
Open Dialogues are a series of online Advocacy Academy sessions from the International Diabetes Federation (IDF). Designed as a space for exchange and learning, the series brings together IDF Members, Blue Circle Voices and Young Leaders in Diabetes. Participants have the opportunity to share experiences, explore pressing topics that affect the diabetes community and beyond, and strengthen their skills as advocates for change.
