What people with diabetes wish they had known at diagnosis

In early 2026, Diabetes Australia’s Membership Team conducted a short survey to better understand what members wish they had known at the time of diagnosis. While informal in nature, the responses revealed several notable insights and clear commonalities in lived experiences. These findings highlight valuable opportunities for health professionals to better tailor their communication and support at the point of diagnosis.

Insights for health professionals

A diagnosis of diabetes is not only a clinical moment, but a life-changing event. Whether identified through routine screening or acute presentation, the point of diagnosis is a critical opportunity to shape a person’s understanding, confidence, and long-term self-management.

Reflections from people living with diabetes highlight consistent gaps in this early experience. While clinical care continues to evolve, these insights provide valuable guidance for health professionals seeking to improve diagnosis conversations and ongoing support.

Information gaps at diagnosis

A common theme across lived experiences is a lack of clear, practical information at the time of diagnosis.

Many individuals report receiving minimal guidance beyond the initial diagnosis itself, leaving them uncertain about the implications of living with a chronic condition. This includes understanding the day-to-day impact of diabetes, as well as the importance of ongoing self-management decisions related to food, physical activity and medication.

These gaps often result in individuals needing to piece together information over time, rather than being equipped with a foundational understanding from the outset.

The need for clear and consistent dietary guidance

Nutrition advice, particularly regarding carbohydrates, was frequently identified as an area of confusion.

Several individuals described receiving prescriptive or, in some cases, conflicting dietary recommendations early in their diagnosis. For some, this created lasting uncertainty about how to manage their condition effectively.

These reflections underscore the importance of providing clear, evidence-based, and individualised dietary guidance, along with acknowledging that recommendations may evolve over time.

Supporting understanding of the long-term pathway

Many people expressed a desire for greater transparency about what to expect after diagnosis.

This includes not only immediate management steps—such as blood glucose monitoring, medication, and allied health support—but also how treatment may change over time and the potential for complications. Without this forward-looking perspective, individuals may feel unprepared for the progression of their condition.

Providing a roadmap, even in broad terms, can support informed decision-making and reduce uncertainty.

The impact of language and communication

The way diabetes is communicated at diagnosis has a lasting impact.

People reflected on both positive and negative experiences with health professionals. Supportive, respectful communication helped build confidence, while judgemental or dismissive language created distress and, in some cases, discouraged future engagement with care.

Person-first language and a focus on empowerment, rather than blame, were identified as critical in fostering a constructive relationship with diabetes management.

Missed opportunities in pre-diabetes

Some individuals reported being informed of pre-diabetes without clear guidance on what this meant or what actions to take.

This highlights an important opportunity for early intervention. Clear communication about risk, alongside practical and achievable steps, may support prevention or delay of progression to type 2 diabetes.

The importance of education and ongoing support

Structured education and community support were frequently described as turning points in individuals’ diabetes journeys.

Many participants noted that their most valuable learning occurred after diagnosis, through peer support, education programs, and engagement with organisations such as Diabetes Australia. These resources helped fill knowledge gaps, build confidence, and normalise the experience of living with diabetes.

Early referral to education and support services can play a key role in improving long-term outcomes.

Key considerations for practice

These insights reinforce several important principles for health professionals:

• Provide clear, staged information at diagnosis, recognising that understanding develops over time
• Offer consistent, evidence-based and individualised advice, particularly regarding nutrition
• Set expectations about the future, including potential changes in management and complications
• Use respectful, non-judgemental, person-centred language
• Ensure proactive follow-up and referral to education and support services

Conclusion

While most people do not expect to understand everything at the time of diagnosis, they consistently express a desire for more clarity, guidance and compassion.

For health professionals, the diagnostic moment represents a powerful opportunity to equip individuals not only with clinical information, but with the confidence to navigate life with diabetes. With the right support, people can be empowered to manage their condition effectively and know they are not alone in doing so.