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Learning to Live with Diabetes

Updated: Nov 6, 2023


diabetes psychology support

I have worked in both paediatric and adult diabetes services for almost 20 years, specialising in the condition before, during and training. A question I am often asked by friends and family members that do not have diabetes is ‘why on earth do they need a psychologist in diabetes services- is it not a medical condition?’. However my friends and family members that have diabetes totally get it! In fact they are often frustrated and angry at the lack of psychological support available to them within their diabetes services. Indeed this is backed up by research and reports that frequently find that the emotional and psychological needs of People with Diabetes (PwD) are under-recognised and unmet across the UK.

There is no other condition where so much of the care and treatment falls to the patient (and/or their family members). Therefore ensuring self-care is as easy as possible is essential. The lack of psychological support for diabetes is of huge concern because we know that lowered wellbeing and heightened distress are significant barriers to optimal self-management of the condition, which raises the risk of serious health complications.


There is no other condition where so much of the care and treatment falls to the patient


For those that don’t know, diabetes is a condition where the person experiences high levels of sugar (glucose) in the blood. This is because insulin, the hormone that helps glucose to leave the blood stream and enter the cells of the body to provide energy, is either not being produced (type 1 diabetes) or is not being used efficiently by the body (type 2 diabetes). We get glucose from the food we eat, which is why diet and activity are important areas to focus treatment on.


Why is elevated blood sugar levels a problem? Well, in the short term this can cause lowered energy levels, an increased need to urinate, increased thirst, irritability and physical discomfort in the body. Many PwD often say to me they know they have high blood sugar levels because they feel really horrible and uncomfortable in their body, and they often feel angry, irritable or restless. In the longer term, high blood sugar levels cause damage to the blood cells, which leads to serious health complications such as nerve damage, heart and blood vessel disease, eye damage (including loss of eye sight) and kidney disease.


Sadly, there is currently no cure for diabetes currently (although there are studies showing significant weight loss can help with putting type 2 diabetes into remission). This means that diabetes will always be present in the persons life- it will not go away. The daily demands of living with this condition are extreme and it significantly affects everyday life. Self-management of the condition is relentless; it requires constant attention, awareness and focus on the body and bodily processes 24/7 days a week, 365 days a year. PwD must monitor their blood sugar level frequently over the course of the day and night, particularly before during and after eating and activity, and they must take prompt corrective actions if it is not within the ‘normal’ range.

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Whilst there are significant developments in technology that are starting to massively lessen the demands of the condition, many PwD still report ‘diabetes burnout’. This is when a PwD feels fed up and overwhelmed by living with the condition. As a result of this they can often get stuck in a vicious cycle of negative or unhelpful thoughts, feelings and behaviours, which lowers motivation to look after the condition. Considering the gruelling and relentless nature of diabetes care tasks required all day everyday, this is really understandable. Many patients tell me they wish they could take a ‘diabetes holiday’, but of course, sadly this is not possible.

‘Diabetes-distress’ is another term describing the specific psychological difficulties PwD experience. These include feelings of anger, frustration, sadness, grief, depression, anxiety and stress about living with the condition, about the impact of the condition of their life and about the monitoring and treatment approaches. Again these feelings are really common, normal and understandable. Many people (and their family members too!) experience a grief or loss reaction when they are diagnosed with diabetes and need to work through the grief and adjustment cycle:

Diabetes support south gloucestershire
Adjustment Cycle

It is common for PwD and their family to experience a sense of shock & denial following diagnosis. This often occurs on a continuum- at one end many PwD can’t quite believe the diagnosis is real and they ask for a second opinion, or they expect that they will wake up the next day and it will have gone away. Some people report to me that they feel the doctors may have made a mistake, or question whether it is perhaps another short-term illness causing the symptoms. At the extreme of the denial/shock end of the continuum some people do not accept the reality of the situation. They may bury their head in the sand, avoid thinking about the condition or making the required lifestyle changes / following their medication regime- hoping that it will go away.


Over time, as the reality of the diagnosis sets in, I often see anger or low mood develop in the PwD and their family members. Some PwDs may start to blame themselves (or even others), beating themselves up over past lifestyle choices & actions. Some people feel a sense of injustice or unfairness and ask ‘why me?’ or ‘why my child?’. However, over time PwDs and their family eventually find that these difficult thoughts & feelings start to pass. The start to make sense of diabetes, they start to learn about it and what it means for their lives & they develop confidence in their ability to manage it. At this point they often start to accept the condition as a part of their life. They find that they start to take control of it & learn how to self-manage it. The start to reconnect with their identity and their usual activities, and find ways to continue to live a meaningful, valued & enriching life, despite the presence of the condition. They build the management of the condition around their life.


So this is where the role of the psychologist comes in; to help PwDs to work through this process and to adjust and adapt to the impact of diabetes on their lives, both emotionally and practically. This is achieved through delivering emotion-focused coping skills to aid with emotional processing, and through providing problem-focused coping skills to aid with the development of helpful diabetes self-management strategies.


Emotion-focused coping skills help with emotionally processing living with diabetes, whilst problem-focused skills help with developing helpful self-management strategies


Emotion-focused coping support involves offering an emotional processing and reflective space to make sense of ones thoughts and feelings about diabetes, as well as providing an emotional regulation skills-building element to develop strategies to cope with difficult thoughts and feelings such as stress, anxiety, low mood or anger. This approach aims to help the PwD to identify unhelpful or negative thoughts that they may have about living with diabetes and to modify or change their relationship to such thoughts, enabling them to act and behave in different, more helpful or positive ways.

Problem-focused coping skills support involves supporting the PwD to develop effective self-management tools, strategies and techniques that they can use in their everyday life to care for their diabetes more effectively. These tools may include goal setting, problem-solving, pacing, activity management, communication strategies and relaxation strategies. Through building in these helpful tools, people often tell me that they feel more accepting of the diabetes, they feel more confident about their diabetes care, and more in control of the condition. This also has an impact on emotional wellbeing, reducing feels of low confidence, low mood, anxiety, stress and frustration, leading to PwD feeling in a better place to self-manage the condition and apply problem-focused coping strategies, creating a helpful cycle!


Another area of psychological support can help with is managing the ‘diabetes police’ in our lives. These are well-meaning friends, families, colleagues, teachers, partners, classmates etc. who ask ‘should you be eating that with diabetes’ or who constantly nag about diabetes care. This often comes from a place of love and care, however many PwD report to me that that they find this is a really infuriating part of living with diabetes. A really helpful problem-focused coping tool that we develop in therapy is assertive communication skills. This approach to communication can help with responding to the diabetes police, as well as help with other issues such as negotiating ways to adapt the day in the workplace or at school to maximise diabetes self-care or building confidence to ask for help from others.


Sadly, this psychological support is not universally available to PwD. A survey of PwDs conducted by Diabetes UK found that up to 70% of PwD felt overwhelmed by the demands of the condition and 75% of those who needed psychological support could not access it. These are huge numbers of people with unmet needs. To me, this is hugely frustrating and totally unacceptable. As others have highlighted (e.g. Sachar et al., 2020 & 2023; Diabetes UK)- psychology support should be a part of the routine treatment and care of PwD. Early access to this support can prevent problems from growing bigger, or even from occurring in the first place. It ensures that PwD are well equipped to manage the many demands of the condition from day one, leading to better health outcomes such as improved day to day blood glucose levels and a reduced risk of developing serious health complications.


As a clinical psychologist, I work hard to champion the needs and voices of PwD. In my NHS role, I am involved in the designing, developing and delivering of specialist pathways in paediatric and adults diabetes services in the South West of England. I am also involved in the development of local policy, which informs how and where care should be delivered for PwD. Further, I oversee the delivery of clinical services - supervising senior psychologists and psychological practitioners to deliver highly specialist psychological treatments for diabetes, providing consultancy to the physical healthcare team and delivering training workshops to skill up the workforce with regards to psychologically-informed diabetes care.


My clinical role with PwD involves supporting children (from birth!), to adults and older adults, as well as their families, who are diagnosed with type 1 and type 2 diabetes. I provide a warm, empathic and non-judgmental space to explore difficult thoughts and feelings about diabetes, to help people work through the adjustment cycle and to develop emotion and problem-focused coping skills. I am passionate about delivering high quality support and will continue to strive to ensure all PwD have access to this!

If you think you might be suffering from diabetes burnout or experiencing diabetes-related distress, why not complete the Diabetes Distress Scale here. If you feel you would benefit from further support then please do view the self-help resources below. If you feel you require more intensive support then please do get in touch with us to book an assessment with a diabetes specialist counsellor or psychologist.



Diabetes Adjustment Booklet
.pdf
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diabetes psychology support




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