For the past 20 years, Ash Byrne has had to take daily insulin injections, carefully monitor his blood sugar, and attend countless doctor appointments to stay alive while battling the ups and downs of having type 1 diabetes.
But the 31-year-old can only count on the fingers of one hand the number of times someone has checked her mental health since she was diagnosed as a child.
As a teenager, gripped by the relentless pressure to control the autoimmune disease, she tried to take her own life.
“At 16 with type 1 diabetes, on top of the struggles at home and being a teenager, I couldn’t cope anymore,” she said.
“I was stuck at an awkward age between seeing a pediatrician and trying to find an endocrinologist to treat me as I approached adulthood, as well as living in a regional area and feeling isolated.
“I felt like I had no one to turn to.”
Ms Byrne said her mother got her the help she needed but was treated for depression and “the mental toll of diabetes was never mentioned”.
“So I tend to think that my art, poetry and composition saved my life. They gave me an outlet to vent my frustrations and worries, and have been there for me when the system hasn’t,” she said.
Now a mother and a poet, Ms Byrne shared her story in her poem Invisible at the Australasian Diabetes Congress in Brisbane last week.
He said diabetes management technology was the best it had ever been, but mental health care for people with the disease hadn’t kept pace.
He wanted more medical professionals to make sure they were regularly monitoring the mental health of their patients.
“Changes are needed because for much of those 20 years my response, and the response of many others, would have been: ‘My mental health is not good, help me,’” he said.
Ms. Byrne said that 90 percent of diabetes management was thinking about her next step.
“There are a considerable number of decisions to be made between opening your eyes in the morning and having breakfast,” he said.
“Everything from checking levels and adjusting for carb counting to considering what clothing will cover your protruding insulin pump or provide easy, discreet access for an insulin pen or syringe.
“This is a huge mental load and a lot of us are not coping.”
Ms. Byrne said that at her regular doctor’s appointments she would be asked about her weight, her blood glucose levels and if she ever planned to become pregnant.
But he said dating rarely focused on how he got by.
“Two years ago I was diagnosed with celiac, and this year I have been told that I have the early stages of diabetic kidney disease,” he said.
“I was handed a script and sent on my way.”
diabetes distress
As one of 1.8 million Australians living with a type of diabetes, Ms Byrne’s experience is far from unique.
Type 1 diabetes, an autoimmune condition that causes cells in the pancreas to stop producing insulin, accounts for 10 percent of cases, and type 2 diabetes, a condition involving insulin resistance and reduced insulin production, it accounts for about 85 percent of cases.
People with diabetes can experience diabetes distress, the emotional distress that can result from having diabetes, and the pressure of unrelenting self-management of the condition, among other mental health conditions such as depression and anxiety.
|
Diabetes type 1 |
Type 2 diabetes treated with insulin |
Type 2 diabetes not treated with insulin |
|
|---|---|---|---|
|
severe diabetic 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 |
Font: Diabetes and Emotional Health
Australian Center for Behavioral Research in Diabetes Foundation Director Jane Speight said that while depression and anxiety can be caused by a 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 really refers to that burden of relentless daily self-monitoring of the condition and it can also come from the societal impact of diabetes,” Professor Speight said.
“So dealing with potentially unhelpful reactions from other people, or their lack of understanding about diabetes, and also potential stigma and discrimination.”
.
