Diabetes: why managing the condition is about so much more than blood sugar levels
People can find the emotional demands relentless, leading to diabetes distress or burnout
Nurses can help people who find the emotional demands relentless, leading to 'diabetes distress' and even burnout
- Diabetes distress – feeling defeated, frustrated or overwhelmed by the condition – has a knock-on effect on physical outcomes and quality of life
- Nursing support starts with asking how the individual is feeling at every appointment, experts advise
- How to identify individuals who need help with the emotional side of diabetes management
While diabetes is a physical condition, its psychological and emotional toll can jeopardise health, even potentially leading to dangerous complications.
‘Managing diabetes can be relentless,’ says Diabetes UK’s senior clinical adviser Libby Dowling. ‘There are so many decisions to be made on a daily basis, with actions needing to be taken regularly through the day, such as checking your blood sugar levels. It can have a real effect on your emotions.’
Emotional distress can affect outcomes and quality of life
Increasingly, healthcare professionals are recognising people who are experiencing ‘diabetes distress’, or even burnout – an elevated form of distress in which someone feels completely unable to manage the physical aspects of their condition.
‘It’s really important to tackle it,’ explains Ms Dowling. ‘How you feel emotionally affects how you are physically, including your coping mechanisms. If we aren’t supporting someone’s emotional health well, we’re not likely to see such good outcomes or quality of life.’
Often confused with depression, diabetes distress is distinct because it centres solely around managing the condition and is unrelated to other difficulties or issues in the person’s life. It may also arise from the social impact of diabetes and worries about what the future may hold.
What is diabetes distress?
Diabetes distress is when a person feels frustrated, defeated or overwhelmed by their condition. Diabetes UK describes it as a natural reaction in individuals who are managing their diabetes all day, every day.
Experiencing diabetes distress can lead to burnout, whereby people may stop taking care of themselves and managing their diabetes, including skipping insulin doses or tablets.
According to the charity, signs and symptoms of diabetes distress include:
- Feeling angry about diabetes and frustrated by the demands of managing it
- Worrying about not taking enough care in managing the condition, yet not feeling motivated to change
- Avoiding appointments and/or avoiding checking blood sugars
- Making unhealthy food choices regularly
- Feeling alone and isolated
Diabetes distress is more than a person’s failure to engage
Struggling to cope with the condition is common. According to research carried out by Diabetes UK in 2017, seven out of ten people living diabetes in any form reported they felt overwhelmed by the demands the condition places on them.
‘It doesn’t mean they all have diabetes distress, but it does show the problems around emotional health in general,’ says Ms Dowling.
‘Managing their diabetes has become too overwhelming. They just don’t want to have to think about it – and you can’t really have a day off’
Libby Dowling, Diabetes UK senior clinical adviser
For healthcare professionals, there are clear warning signs. ‘What should alert nurses is someone coming into clinic who isn’t checking their blood sugars like they used to,’ says Ms Dowling. ‘They may also not be following the diet we might hope they were, or may not even be coming in as regularly.’
It’s vital that nurses don’t just dismiss what’s happening as a failure to engage. ‘For the person, managing their diabetes has become too overwhelming,’ says Ms Dowling. ‘They can’t deal with it and everything has become too much. They just don’t want to have to think about it – and you can’t really have a day off.’
While more healthcare professionals are thinking about the emotional and psychological side of diabetes, there remains a lack of understanding, she says.
‘There’s still a long way to go. For nurses, there are issues about being able to recognise diabetes distress and offer help.’ These include time constraints, which inevitably lead to prioritising quantifiable results.
How to help people cope with the demands of diabetes
- Be aware of the emotional impact of the condition and ask about it, advises Diabetes UK senior clinical adviser Libby Dowling. ‘The two go hand in hand,’ she says. ‘And it might be enough just to talk’
- Be mindful of the language you use, says Ms Dowling. ‘We don’t refer to people with diabetes as “diabetics”, as that defines them by their condition. We also tend not to use “patient”, as that implies a dependency on the healthcare system. What works better is an equal partnership’
- Look past the numbers, says Jo*, who has experienced diabetes distress first hand (see box below). ‘It’s not about your graphs,’ she says. ‘There’s a person underneath the condition. They have to deal with this 24/7 and they never get a break. Try to empathise with how tired they might feel and how mentally draining it can be’
- Don’t describe individuals as ‘non-compliant’, says Ms Dowling. ‘It’s a particularly unhelpful term. If someone isn’t engaging as we might like them to, we need to ask why that is and why our expectations are so different. We need to be meeting the person where they are, not where we want them to be’
- Invest in building a good relationship with individuals, says Jo. ‘Having that trust and rapport opens up the space for someone to open up and talk about how they’re feeling. Talking reduces the shame and stigma’
- Be mindful of events or changes that could trigger diabetes distress, says Ms Dowling. While it can happen at any time, particularly risky circumstances or periods include diagnosis and soon afterwards, experiencing diabetes complications, and significant life events, such as pregnancy, bereavement or divorce. ‘Another really key time is when young people transfer from children’s services to adult,’ says Ms Dowling. ‘Unless it’s managed well, that’s a time when emotional issues can arise’
*Individual’s real name withheld
Identifying individuals who need emotional and psychological support
Nurses can be afraid to query too, says Ms Dowling, because they don’t know how to deal with the response.
‘You can be frightened of saying the wrong thing or making something worse, so sometimes it seems easier not to ask,’ she says.
‘Everyone should be asked how they’re feeling when they go to their diabetes appointment’
To tackle this head on, Diabetes UK has launched a campaign, underpinned by its report Too Often Missing: Making Emotional and Psychological Support Routine in Diabetes Care.
‘Everyone should be asked how they’re feeling when they go to their diabetes appointment,’ says Ms Dowling. The charity also wants teams to have access to a mental health professional who understands diabetes.
‘Closer integrated working is key. If you can look after people’s emotions, it has a knock-on effect on their physical health,’ she says.
Nurses working in a variety of settings are pivotal in providing high quality care, including those who work in general practice, who often run clinics for people with type 2 diabetes.
‘Nurses are often the professional that someone will have the most contact with in the diabetes team,’ says Ms Dowling. ‘They’re in a very privileged position to know the caseload of people they’re looking after, identifying those who are struggling emotionally and beginning to provide the support they need.’
‘No one tells you how much effort it takes to manage diabetes’
Jo, whose real name has been withheld, was diagnosed with diabetes as a teenager.
‘When I was diagnosed more than a decade ago, I was only taught how to manage the condition physically,’ she says. ‘I had no inkling that it would have an effect on my mental or emotional health or my social life. I hid my condition from most people for a long time and only began talking about it around four years ago. I think that’s when I began to really process the burden of it.
‘I remember starting to feel fed up with diabetes. I was sick of all the thinking that goes into managing it. I was always trying to get my sugars down, but the effort I put in never seemed to show in my results. I kept thinking “what’s the point?”.
The beginning of burnout
‘My memory of that time is doing fewer and fewer blood checks and injections. I would rather enjoy the moment than take my injection. I used to prioritise other things. I felt like if I ignored my diabetes, I could pretend I didn’t have it. Burnout was starting really, but I didn’t know what that was then.
‘A few months later I became physically poorly. When I went to see the diabetes specialist nurse, she said it sounded like diabetes distress. Changing to an insulin pump worked for a little while, but it’s a different way of managing your diabetes that means you need to count carbs even more carefully. In the end, it overwhelmed me, and I had to take time off sick.
‘I ended up being in hospital for nine months, which helped me to physically recover enough to change the way I thought, by starting to tackle the mental and emotional challenges.
‘No one tells you about the amount of effort managing diabetes takes. You’re always thinking about your blood sugars and trying to correct what’s wrong. You never feel on top of your diabetes because if you make a mistake or don’t predict something, you pay for it later. It’s not so much the physical stuff I find so draining, but the mental side of it – always having to plan and you can’t even take an hour off.
‘Talking about how I felt helped me cope’
‘We also put a lot of pressure on ourselves, thinking that we should be good at managing diabetes because we’ve been living with it for a long time, but we still can’t get it right. That frustration builds up over years and years.
‘Now I see my diabetes team every week and they are really supportive. I have more good days than bad. Talking about how I felt really helped me; I’d never expressed some of my feelings before. Admitting that I needed help was really important, with an amazing team to relieve the burden.
‘My diabetes specialist nurse knew me well and I trusted her, so she was a safe person to express my emotions to. She was incredible at listening and asking how she could help. If I didn’t have such a good relationship with her, I wouldn’t have had anyone to talk to and I don’t know what would have happened. It would have been a dangerous situation.
‘The team has learned to always ask how I am and how I’m managing, rather than evaluating how I’m doing just based on the numbers. It’s about so much more than that.’
Asking how the person is feeling at every appointment
As a starting point, Ms Dowling recommends following the charity’s advice and asking how someone is feeling at every appointment. ‘Sometimes just asking the question and talking about it can be helpful in itself. You don’t necessarily have to do anything.’
Other coping strategies include adopting less rigid regimens for a short time. ‘It may be that someone is aiming for really tight targets with their blood glucose levels, so perhaps relax them a little,’ she says.
‘It’s all individual and it needs to be planned between the person and their healthcare professional. It’s really important people are open about how they’re feeling, because there are things you can do that may lessen the burden for a while.’
Ultimately, it’s about understanding that physical health and psychological well-being are interdependent.
‘We want people with diabetes to live healthily and happily for a long time. But unless we put as much emphasis into the emotional side as the physical, we’re not always going to get there,’ says Ms Dowling.
- RELATED: Diabetes essentials
Useful resources for nurses
- Language Matters: Language and Diabetes Published in June 2018 by NHS England, this guide sets out the principles for good practice in interactions between healthcare professionals and people with diabetes, detailing common examples and alternatives. It advises using language that is free from judgement and negative connotations, person-centred and collaborative and engaging rather than authoritarian and controlling. ‘Use or develop an empathetic language style that seeks to ascertain a person’s point of view of their condition, rather than assume,’ says the guide
Diabetes UK produces a variety of resources to help healthcare professionals provide high quality care for people with diabetes, including:
- Information prescriptions for people with diabetes Resources designed to help people understand their diabetes and take ownership of their care, with an agreed personal action plan. Eight different prescriptions cover issues such as mood, blood pressure, feet, cholesterol and kidney disease
- Diabetes and Emotional Health A practical guide for healthcare professionals supporting adults with type 1 and type 2 diabetes. Includes sections on diabetes distress, fear of hypoglycaemia and other diabetes-specific fears, and referring to mental health professionals
- It’s Missing: emotional and mental health support campaign Calls on UK health services to create national standards for emotional and mental health support
Lynne Pearce is a health journalist