Diabetes: Emotional and mental wellbeing concerns
Diabetes: Emotional and mental wellbeing concerns
Distress about diabetes and mental health concerns are common in children and young people with diabetes. Support is available to help you and your family.
Key points to remember
- having diabetes and managing it on a daily basis is stressful for children, young people, and their families
- distress about diabetes and mental health concerns are common in children and young people with diabetes
- support is available to help you and your family
Why is diabetes stressful?
Having diabetes means incorporating a range of behaviours on a daily basis into an already busy lifestyle. Having to check blood glucose levels, being aware of food intake and taking insulin on a daily basis can be overwhelming. When blood glucose levels do not respond the way 'they are supposed to' this can be frustrating, stressful, and make a person despondent. This can also cause arguments and conflict between parents and children because everyone is trying to find an answer to 'why is your blood glucose level so high/low?'
Motivation for managing diabetes can come in ebbs and flows. At different times of the diabetes journey, people's motivation to keep blood glucose levels in target range can go up and down. 'Diabetes burnout' is now a recognised state, where a person grows tired of managing their diabetes and gives up on carrying out diabetes management tasks. This can include monitoring blood glucose levels, recording blood glucose levels, counting carbohydrates, and taking insulin. Diabetes burnout can also lead to depression.
A child's emotional response
Your child will have their own emotional reaction to their diagnosis of diabetes. They will feel overwhelmed and fearful of the future. Hospitals are strange places, they don’t have the comforts and familiarity of home and your child will experience levels of physical discomfort as part of their treatment.
Once you are home, you might find that they become worried about other areas of their life and see a drop in their confidence.
Siblings and the wider family's emotional response
Your other children will also feel worried about their brother or sister with diabetes. They are likely to see you upset and are not sure how to react. You will obviously need to focus your attention on learning about diabetes, and they, understandably, might feel left out. Often older siblings react by trying to become overinvolved and end up taking on too much responsibly for their sibling's diabetes management. Other relatives and friends, will also feel concerned, but might not know how best to help.
What you can do as a parent to help
- make sure that diabetes management tasks are shared between yourself and your child/young person
- check in to see how they are doing with all that is expected of them
- make sure your expectations are suitable for the age and stage of your child
- let your child know it is OK not to like diabetes
- focus on the behaviours that a person is able to do (checking blood glucose levels, taking insulin) rather than the 'numbers' (blood glucose levels, HbA1c)
- don't punish your child for high or low numbers - if you put consequences in place, put them in for the behaviours that your child has control over
- give attention for things other than diabetes - ask about something else other than diabetes
- spend special one-on-one time with your other children to prevent them from feeling left out - although this is never a parent's intention, it is common when faced with a chronic illness
- advise your child's diabetes team so that they can talk to your child on their own to see how they can help
If you have concerns about your child, it is important to start talking to other adults that care for your child. Ask relatives and friends if they have noticed any changes in their behaviour. Have a quiet word with your child's teacher or other staff members who help with your child's diabetes care.
Most importantly, talk with your child, ask them how they are feeling, share with them that you can see things are difficult and reassure them that there is help and that they are not alone.
When should I seek help?
Once your child is diagnosed with diabetes, you will need a clear understanding of your new responsibilities and your child's needs and capabilities at each developmental stage of their life.
You know your child best of all - one of your key roles is to notice when they are not doing so well emotionally.
Signs your child may be emotionally distressed:
For under 5s
- temper tantrums with blood tests or injections
- regressive behaviours, such as a return to bed wetting
- refusing to eat or overeating
- hair pulling
- nightmares and needing comfort at night
For children and adolescents
- changes in the HbA1c
- missing injections
- not checking their blood glucose levels
- hidden food wrappers or missing food from the pantry
- removing their medical alert bracelet
- changes in their friendships or withdrawing socially
- playing computer games for hours in their room
- being angry - often a sign that a child is feeling very anxious
- voicing concerns about feeling different from everyone else
- saying they 'don't care anymore'
- having no interest in their future
Engaging in risk behaviours as an adolescent
- drinking alcohol, underage
- using illegal drugs
- being sexually active, underage
- truanting school
- bullying or being bullied
Where do I go to for help?
For some children they will need to have support from professionals. If your child's behaviours or emotional responses are severe or are ongoing (last for longer than a couple of weeks), your child may require extra help to cope. In addition, help from specialist services may be more likely for children or young people who have had previous mental health difficulties.
If you are concerned, you should contact your family doctor or local diabetes team who will be able to advise you what support is recommended and available.
A parent's emotional response
It is normal as a parent to feel overwhelmed and fearful when your child is diagnosed with type I diabetes. Feeling wornout with diabetes is not just for the person who has diabetes. The burden of a child's diabetes also falls on to a parent.
Everyone is different, but these are some ways that people deal with trauma:
- people often seek comfort - they eat more; drink alcohol to excess; misuse drugs or throw themselves into work, essentially, try and block out difficult feelings
- others respond by trying to control every aspect of their lives, to protect themselves from further frightening experiences - they become highly rigid; keep the house tidy, to the extreme; avoid any new experiences; stay at home and become much less social
Therefore, as a parent it is very important that you look after yourself as well. This is often easier said than done, because a parent's focus is often on their child. However, you need to strengthen yourself so you can be strong for your child. It is important to access support systems available to you and share the emotional burden that you are carrying.
Mental health concerns in diabetes
Diabetes is a psychologically challenging condition; it's boring, relentless, invasive and even painful at times. Managing diabetes will continue to have an emotional burden throughout your child's life. Research shows that symptoms of anxiety and depression are common in children and adolescents with diabetes. Mental health concerns can interfere with management and treatment of diabetes. They can also impact on the functioning of the whole family. If a person is depressed or anxious they can get into patterns of behaviour (for example, avoiding certain situations or task) that are meant to help a person but may actually make things worse.
It is likely that your child will feel different from their peers; find the practicalities of diabetes management annoying and distracting and get dispirited when their blood glucose levels are out of range. It is common for both children and adolescents to feel controlled by their diabetes and find ways to fight against it. This can include eating lots of lollies and biscuits; not injecting insulin or checking their blood glucose levels. They might also try to manage your feelings, perhaps telling you false levels, so not to worry you.
People with diabetes have higher rates of 3 mental health disorders than people without diabetes - depression, anxiety, and eating disorders.
More information about depression and anxiety
It is important to know that anxiety and depression can be overlooked in people with diabetes. This is because the physical signs of depression and anxiety can be the same as that of hyperglycaemia and hypoglycaemia. For this reason, it is important to look at the emotional and thinking aspects of a person's wellbeing.
For more specific information, see the kidshealth pages on:
Expressing suicidal thoughts and plans
After a diagnosis of diabetes, it is normal for children and adolescents to feel despair at times. Expressing suicidal thoughts often means that they want to change their life (for example, not have diabetes) rather than that they want to end their life. However, suicidal thoughts and any evidence of cutting (usually on arms and upper legs) and other injuries (such as burns), are evidence of your child being significantly distressed. It is important to remember that children and adolescents with diabetes are particularly at risk of impulsive acts of self harm, as they have access to insulin.
Suicidal thoughts or evidence of self harm needs to be taken very seriously. Please contact either your family doctor or your diabetes team.
More information about post traumatic stress disorder
A diagnosis of diabetes is classed as a traumatic experience which is an experience that you could not predict, is out of your control and causes harm to yourself or a loved one. There is a normal psychological process that follows a traumatic experience and is understood as post traumatic stress disorder (PTSD).
There are a range of psychological symptoms that are common when experiencing PTSD:
- disturbed sleep
- hypervigilance (checking for further threats)
- overwhelming fear
- a sense of dread and danger
- panic attacks
- feeling disconnected
- having recurring and intrusive flashbacks of the traumatic event
More information about eating disorders
Unfortunately, eating disorders are not uncommon in our society and large numbers of young people, both male and female, are dissatisfied with their weight. While eating disorders are more common in females, males can also be affected. Diabetes can make a person focus on their weight, body, and food intake. This can put a person with diabetes at greater risk of body image disturbance and eating disorders. Restricting their food intake, increasing their exercise and managing their weight and body shape, might be a way for them to feel less anxious and more in control or even to punish their bodies. Signs to look out for are:
- rapid weight loss
- hiding their body in loose clothing
- evidence of vomiting (broken blood vessels on their face, sounds of retching and vomit in the sink or toilet)
- going to the toilet frequently after meals
- only eating certain foods, or reducing portion size
- excuses in order to avoid eating meals
- being uncomfortable eating in front of others
- missing food from the pantry due to binging
Due to the interplay between food intake and blood glucose control, it is important to work closely with your diabetes team if there are weight or body image concerns. Your family doctor can also help to assess whether the concerns require specialist services.
Diabetes and Eating Disorders Awareness (DEDA) is the only organisation in Australasia dedicated solely to supporting and advocating for those with both diabetes and disordered eating. See the DEDA website.
Treatment for eating disorders
Anorexia and bulimia are medically serious conditions. Medical, psychiatric, and psychological care are an essential part of treatment. For this reason, a referral to mental health services is recommended. A young person with an eating disorder can have a significant impact on their family, so work with the parents and family is also a key part of any treatment.
To begin with, your doctor is the best person to see if you have concerns about your child or young person. It is also important to discuss your concerns with your local diabetes team who will also be able to provide advice and support.