What is diabulimia?
The physical symptoms of diabetes need managing 24 hours a day, seven days a week. Recent research revealed that seven out of ten people feel overwhelmed by the demands of living with the disease.
In the Diabetes UK survey of over 2,000 adults living with type 1, type 2 and other forms of diabetes, three quarters of those who said that they felt overwhelmed believe this feeling affects how well they manage their condition.
Diabetes is characterised by high glucose levels in the blood. It occurs when the body's ability to produce insulin, a hormone which allows the cells in the body to take in glucose, is impaired, or the effectiveness of the insulin produced is reduced.
People with type 1 diabetes are unable to produce insulin. It is unclear why, but it is unrelated to weight or diet; neither is it preventable. It affects around 8% of people with diabetes and is the most common type amongst children and young adults. It is treated with daily doses of insulin via injection or insulin pump.
Around 90% of people with diabetes have type 2 - either their body doesn't make enough insulin, or the insulin it does produce is ineffective. Individuals may have a family history of the condition, or be at greater risk because of their age, lifestyle or ethnic background. It can always be improved with a healthy diet and increased physical activity, but usually tablets and/or insulin are needed as well.
The remaining 2% of people have other types of diabetes, often related to other illnesses or medications.
'A bolt from the blue'
Managing the physical symptoms of diabetes can be all-consuming, and can affect every aspect of a person's life, including their emotional and mental health. This could range from day-to-day frustration and low mood to depression and anxiety, to living in fear of their blood sugar dropping too low and experiencing a hypo.
Nicki Hornby, 50, has had type 2 diabetes for 14 years. "It was very much a bolt from the blue. Anger and shock have been prominent, but I get very low mood too, especially when I've had a hypo. I often feel, why me? I've done everything right. I've led a healthy life."
"The enormity of what I'm dealing with can feel overwhelming, and it's very hard to stop the negativity creeping in. It has often driven me to tears, and feelings of frustration have led to much darker thoughts," explains the teaching assistant.
Dr Farah Gilani, a Medicspot GP describes this as 'diabetes distress'. “This is a condition where people with diabetes experience emotional distress, with negative thoughts and feelings. It is not the same as depression or anxiety but can lead to these if unrecognised."
People with diabetes are twice as likely as the general population to develop depression or anxiety: they may be concerned about whether they are managing their condition appropriately, what other people think and the possible serious complications of the disease. They may also feel a lack of control in their lives. All these worries can cause one to feel overwhelmed and lead to stress and distress.
How mental health affects diabetes management
"The stigma associated with having a chronic condition such as diabetes can make these feelings worse," explains Gilani. "Psychological distress can then lead individuals to disengage with their diabetes management plan, leading to a vicious cycle where the diabetes is poorly managed and makes the psychological suffering worse."
Hornby has never been offered any emotional support for her diabetes. "Maybe if there was something offered, it would get me through the rough stuff," she states. "I'd like a healthcare professional to ask specifically: 'How is your diabetes affecting you emotionally?’ Would you like to talk with someone about it?' I've never had that."
The report found three quarters of those needing specialist mental health support from a counsellor or psychologist to help manage their condition could not access it, and seven out of ten people with the condition said their diabetes teams did not encourage them to talk about their emotional well-being.
Similarly, 40% of GPs surveyed said they are not likely to ask about emotional well-being and mental health in routine diabetes appointments, while only 30% believe there is enough psychological and emotional support for people living with diabetes when they need it.
"The day-to-day demands of managing diabetes can be a constant struggle affecting people's emotional well-being and mental health. In turn, people tell us that struggling emotionally can make it even more difficult to keep on top of self-management," explains Chris Askew, chief executive of Diabetes UK.
"Mental health and physical health go hand in hand, but services for people with diabetes don't always reflect this. We need to bridge the divide between physical and mental health services to ensure those with emotional and psychological difficulties related to their condition do not have their needs overlooked," says Askew. "It is critical that all diabetes care sees and supports the whole person, and explores what matters most to them."
Where to get support
Gilani suggests those with diabetes can improve their mental health by seeking professional help.
"Speak with your GP about not only your physiological symptoms but also your emotional well-being. They will be able to offer appropriate support, recommending lifestyle changes and prescribing medication if needed."
"For people newly diagnosed with diabetes, referral to an education programme can help them feel more empowered to manage the condition and to gain peer support from others with the condition."
There is an increasing number of diabetes teams throughout the UK who are recognising the need for psychologists and counsellors to specifically help patients with diabetes who have mental health concerns, says Gilani. A good support network is also key to managing diabetes. Sharing concerns about the condition will help those with diabetes feel less isolated and overwhelmed by the symptoms they are experiencing. Exercising regularly has also been shown to improve mood, reduce glucose levels and maintain a healthy weight, which can help alleviate the feeling of diabetes distress.