For the past 20 years, Ash Byrne has had to inject herself with insulin daily, carefully monitor her blood sugar, and attend countless medical appointments to keep herself alive as she has battled through the lows and highs of having type 1 diabetes.
But the 31-year-old can only count on one hand the number of times someone has checked on her mental health since being diagnosed as a child.
As a teenager, gripped by the relentless pressure to manage the autoimmune condition, she tried to take her own life.
"At 16 with type 1 diabetes, lumped on top of struggles at home and being a teenager, I couldn't cope anymore," she said.
"I was caught in an awkward age between seeing a paediatrician and trying to find an endocrinologist who would treat me as I approached adulthood, coupled with living in a regional area and feeling isolated.
"I didn't feel like I had anywhere to turn."
Ms Byrne said her mum got her the help she needed, but she was treated for depression and "diabetes mental load was never mentioned".
"So I tend to think that my art, poetry, and songwriting saved my life. They gave me an outlet to vent my frustrations and worry, and they've been there for me when the system hasn't," she said.
Now a mother and poet, Ms Byrne shared her story in her poem Invisible at the Australasian Diabetes Congress in Brisbane last week.
She said the technology for diabetes management was the best it had ever been, but mental health care for people with the disease had not kept pace.
She wanted more medical professionals to ensure they were regularly checking on their patients' mental health.
"Changes are needed because for much of those 20 years my answer, and many others', would have been: 'My mental health is not OK, help me'," she said.
Ms Byrne said 90 per cent of managing diabetes was thinking about your next step.
"There's a considerable amount of decisions to make between opening your eyes in the morning and eating breakfast," she said.
"Everything from checking levels and adjusting to counting carbohydrates to considering what clothing is going to cover your protruding insulin pump or give easy and inconspicuous access for an insulin pen or syringe.
"This is a huge mental load and many of us are not coping."
Ms Byrne said she would be asked at her regular doctor's appointments about her weight, blood glucose levels, and whether she was planning to be pregnant at any time.
But she said the appointments rarely focused on how she was coping.
"Two years ago I was diagnosed as coeliac, and this year I've been told I have the early stages of diabetic kidney disease," she said.
"I was handed a script and sent on my way."
Diabetes distress
As one of the 1.8 million Australians living with a type of diabetes, Ms Byrne's experience is far from unique.
Type 1 diabetes, an autoimmune condition causing cells in the pancreas to stop producing insulin, accounts for 10 per cent of cases and type 2 diabetes, a condition that involves insulin resistance and reduced insulin production, accounts for about 85 per cent of cases.
People with diabetes can experience diabetes distress, the emotional distress that can result from having diabetes and the pressure of relentless self-management of the condition, among other mental health conditions including depression and anxiety.
Type 1 diabetes |
Insulin-treated type 2 diabetes |
Non-insulin-treated type 2 diabetes |
|
|---|---|---|---|
Severe diabetes distress |
One in four people |
One in five people |
One in 10 people |
Moderate-to-severe anxiety symptoms |
One in six people |
One in five people |
One in six people |
Moderate-to-severe depressive symptoms |
One in four people |
One in three people |
One in five people |
Source: Diabetes and Emotional Health
Australian Centre for Behavioural Research in Diabetes foundation director Jane Speight said while depression and anxiety could be caused by any number of issues, having a chronic condition like diabetes could exacerbate those symptoms or cause them.
Professor Speight said the constant pressures of living with diabetes could also lead to some experiencing levels of diabetes distress.
"It's really referring to that burden of the relentless daily self-management of the condition and it can also arise from the social impact of of diabetes," Professor Speight said.
"So dealing with other people's potentially unhelpful reactions, or their lack of understanding about diabetes, and potentially stigma and discrimination as well."
