From bodyandsoul.com.au
It takes a toll
While you may be familiar with the insulin pumps and blood tests that become part and parcel with a type 1 diabetes diagnosis, you're probably less aware of the mental burden of the disease.
Know someone with type 1 diabetes? Those affected make hundreds of health decisions every day, balancing insulin, food, movement and rest in a way that many of us are unaware of.
And while type 2 diabetes is far more common, due to its link to lifestyle factors, type 1 is a different beast: an autoimmune disease, with an unknown cause, and no cure.
It's no wonder burnout, anxiety and poor sleep are so common in people with type 1 diabetes. Yet these side effects are rarely spoken of, surpassed by the physical demands of the condition.
Often thought of as a childhood condition, around 88 per cent of people living with type 1 diabetes in Australia are 21 or older, managing their condition while juggling work, family, social lives and more.
Beyond the long-term damage and complications caused by diabetes (including permanent damage to eyesight), the toll of managing the condition can increase the likelihood of mental health issues.
With over 1.3 billion people predicted to have diabetes by 2050, these cumulative side effects are worth considering, whether you or someone you love is affected.
Hundreds of decisions, every day
Dr Ben Nash, a Melbourne-based endocrinologist and medical affairs director at Medtronic Diabetes Australia, was 17 when he was diagnosed with type 1 diabetes.
“There's a lot of cognitive burden, a lot of micro decisions that you have to make with type 1 diabetes, every day and every minute of every day,” said Nash at a recent Medtronic event. “It's essentially like having a second job – unfortunately, it's not a job you've asked for.”
Describing type 1 diabetes management as “like walking a tightrope,” Nash says it requires a constant balance between blood sugar that’s too high, with long and short-term risks, and blood sugar that’s too low, which can starve the brain of glucose.
That constant balancing act carries a significant psychological cost, says psychotherapist and counsellor Rebecca Hirst. “There is a constant need for risk management, and personal responsibility for survival – a kind of vigilance that means one can never really switch off, with a nervous system on a low-level ‘threat response’ mode,” says Hirst.
Phoenix Goozée was diagnosed with type 1 diabetes when he was six, and for him, keeping well has become a second nature. Staying active and healthy has helped his situation a lot, says Phoenix., who adds that “If you stick to the practices of a healthy life, that coincides with a healthy diabetic."
“People managing chronic health conditions, especially in adulthood, have often developed very high levels of competence – adaptive coping strategies that signal ‘Everything’s fine’, when in fact, the weight of living with the condition may be becoming unmanageable,” says Hirst.
While Goozée says he doesn’t feel mentally burdened by diabetes, he admits that life would, of course, be easier without it. “It has become second nature, the injections and checking sugar levels, but I wish I didn’t have to do that,” he says. “I see people eating, not thinking about what their sugar levels are…it’s a bit of a pain in the arse, to be honest.”
The mental load can also fall to family members. “My partner Emily is really good at picking up the cues of me having a hypo [when blood glucose drops too low],” says Goozée. “We’ve had ambulances called because of a few close calls, so she’s had the mental load on that side of things.”
Supporting a loved one with type 1 diabetes
While often we focus on the medical side of chronic illness, family and friends should also be aware of a person’s felt experience, says Hirst. “We know that when someone feels alone or emotionally misunderstood in their experience, their stress and pain levels increase, and their symptoms often do too,” she says.
To better support a loved one with type 1 diabetes, acknowledge the invisible load they’re carrying, but also avoid ‘checking behaviours’, as this can undermine a person’s autonomy.
It's also crucial to do your own research. “You can help reduce the cognitive load of your loved one by learning about the condition independently, and even helping to educate others for them,” says Hirst.
While some people with type 1 diabetes, like Goozée, reduce the load through strict routines, others rely on technology to help shoulder the cognitive work. Advances such as continuous glucose monitoring and insulin pump systems are designed to respond to changes in glucose levels in real-time, reducing the need for decision-making.
Since his diagnosis as a teen, Nash has gone on to specialise in diabetes, yet he admits he still has “a hard time with diabetes on a day-to-day basis.”
“It's not easy – it takes a whole team to help manage it,” says Nash. “There's this constant background burden you have to deal with on top of all the other important things you have to do day-to-day.”
From a mental health perspective, Hirst says there doesn’t need to be a breaking point to seek support.
“There’s no ‘threshold’ of suffering that people need to reach in order to be justified in choosing to start therapy,” she says.
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