For many people, a diabetes diagnosis is not just a medical moment, it’s a life moment. It can arrive quietly, during a routine blood test, or dramatically, alongside a hospital admission or major health event. But across diabetes types and decades of lived experience, one theme consistently emerges: people wish they had been told more at the beginning.

When we asked Diabetes Connect community members what they would like to have known at diagnosis, the responses were candid and honest. Together, they paint a picture of missed conversations, evolving advice, and how important compassionate information was.

“I was given very limited information”

For Fran, diagnosed with type 2 diabetes at age 42, the early days were marked by uncertainty.

“I was given very limited information by my GP at the time,” she recalls. Now 10 years post-diagnosis and managing her diabetes with tablets, a GLP-1 medication and daily insulin, Fran wishes she had better understood, “the weight of this being a chronic condition that affects my eating and activity decisions every day.”

Like many others, Fran highlights how important it would have been to connect with other people living with diabetes early on, to understand not just treatment pathways, but the emotional and practical realities of long-term self-management.

Conflicting advice about food and carbohydrates

Nutrition advice, particularly around carbohydrates, was one of the most common and contentious themes raised.

Helen, diagnosed around 30 years ago, remembers being told by a dietitian that she must eat carbohydrate three times a day at every meal.

“Even then I couldn’t understand why someone with type 2 diabetes would be told to regularly eat the very thing I had trouble metabolising,” she says.

Sandi had a similar experience, but in even firmer terms. “I was told it had to be at least one third of the plate,” she says. “The WORSE thing I could have ever been told.”

These responses reflect how dietary guidance has changed over time, and how confusing or even harmful outdated advice can feel when lived with for years.

More than a diagnosis

Julie, diagnosed almost 20 years ago, had a different experience. She describes having “an excellent GP and a brilliant endocrinologist who were knowledgeable and supportive from the start”.

What she wishes she had been told, however, goes beyond medical management. “Probably the simplest answer would be to be told that my condition does not define me,” she says. “I am not ‘a diabetic’, I have type 2 diabetes just like I might have any other medical condition.”

It’s a reminder that language can shape how people relate to their diagnosis.

What comes next?

For Jo, diagnosed 25 years ago, the biggest gap was not understanding the road ahead.

“I wished my GP had gone through what would come next,” she says. She lists the elements she had to piece together herself: treatment routines, blood tests, dietitian visits, exercise, eye testing, and podiatry. She also wishes she’d been told how treatment might change over time and about potential complications.

“Knowledge is power in self-care,” Jo says. A sentiment echoed throughout the responses.

A lack of information

Some of the most striking stories come from people who felt left completely in the dark.

Raewyn was diagnosed at 45, initially as type 2, before discovering she had LADA. Oral medications didn’t work, and she was quickly moved to insulin therapy without adequate education.

“I wish I was told something, anything, about this condition I had just been diagnosed with,” she says. Over time, she experienced frequent hypos, had to give up her physically demanding job, and learned through painful experience how dangerous insulin mismanagement could be.

“No information was forthcoming at diagnosis,” Raewyn reflects. “Over the last 25 years I have figured it out for myself.”

Diagnosis alongside other health shocks

For Keverall, a type 2 diabetes diagnosis came in the aftermath of a major cardiac event.

“I was diagnosed… after having a widowmaker heart attack just before my 59th birthday,” he explains.

While initial support was lacking, his experience with Diabetes Australia, particularly the Launceston branch and a regional support group, was overwhelmingly positive.

“I have always found Diabetes Australia to be very helpful,” he says, highlighting the crucial role community organisations play when formal systems fall short.

Missed opportunities in pre-diabetes

Several respondents reflected on what they weren’t told.

Gary, now living with type 2 diabetes, remembers being told he had pre-diabetes after a glucose tolerance test, but not being told what to do next.

“He didn’t tell me to change anything and I didn’t know enough to ask him what it meant,” Gary says. That knowledge gap, he feels, made a real difference.

The emotional impact

Beyond the practical considerations, many people spoke about the emotional impact of diagnosis and the language used by health professionals. Pam’s experience was particularly distressing and in recounting her story she admits she’s surprised she still feels so strongly about it more than 25 years later.

“I was referred to expert, knocked on her door, and got permission to enter. She didn’t look up but pointed to the chair for me to sit down. Then she said, ‘you realise you’ve brought this all on yourself’. And that was my introduction to ‘help’.”

Pam’s experience discouraged her from seeking professional support for years.

“It was an awful introduction to managing my diabetes,” she reflects, and a reminder of the harm that judgement can cause.

The value of community

For many, the most helpful learning came later through lived experience, peer support, and community.

Madhu, who has lived with type 2 diabetes for 30 years, wishes she’d been told about the potential side effects of medications, particularly the risk of vitamin B12 deficiency with long-term metformin use.

“I learned about this through the diabetes forum,” she says. “My GP or endocrinologist didn’t mention it.”

Looking back, most people didn’t expect to understand everything at diagnosis, but they did wish for more clarity, and more compassion. What they want newly diagnosed people to know today is that diabetes is manageable, that support exists, and that no one has to navigate it alone.

Looking for more support?

Call Diabetes Australia on 1800 177 055 and ask to speak to a health professional. For peer support, see below:

Diabetes YOUnited. Diabetes Australia’s free member community diabetesaustralia.com.au/membership

Diabetes peer support groups peersupport.ndss.com.au

JDRF peer support for type 1 diabetes Type 1 diabetes peer support program | Breakthrough T1D

GROW mental wellbeing programs grow.org.au

LiveUp – Offers support and social activities that promote healthy ageing. Contact 1800 951 971 or visit liveup.org.au

You may also find the resources listed in this article helpful.