Physical health and emotional wellbeing

Adjustment to illness

Young people diagnosed with a chronic illness or long duration acute illness can sometimes have difficulty adjusting following diagnosis. They may have a hard time understanding what their illness means or they may have difficulty adjusting to their treatments or medication. An illness can also affect a child’s abilities, which can cause adjustment difficulties.

If your child receives a diagnosis of an illness that is going to affect their everyday life, some mood or behavioural changes while they adjust are expected. This can include:

Common feelings:

• Anxiety or stress
• Sadness
• Anger
• Fear or worry
• Confusion

Common behaviours:

• Separation anxiety from caregivers
• Changes to sleep
• Tearfulness
• Regression in behaviours (no longer do things they had previously done)
• Avoiding talking about their diagnosis
• Not wanting others to know about their health condition
• Difficulty with treatments or taking medications

Some changes in mood and behaviour are expected and are a normal reaction when a young person is adjusting to a change like this. If these changes last for more than a couple of weeks or begin to interfere with day-to-day life, for example, they will not engage in previous activities such as socialising or school, support may be required.

Some children will initially appear that they are adjusting to their new illness without difficulty and it is only after a while that their adjustment reaction is obvious. Often when newly diagnosed with a chronic illness, young people do not immediately grasp the impact it will have. This means that they may initially cope well and it is only after a couple of months they begin to experience mood and behavioural changes – when they realise the impact of their illness.

How a medical diagnosis can affect areas of a young person’s life:

School: They may miss periods of school or have alternative education arrangements if they are ill

Friendships: Young people with illnesses may have different restrictions that their peers do not and may feel isolated

Hobbies: A young person may not be able to participate in extra-curricular activities or other hobbies that they enjoyed before

Social activities: Attending social events such as birthday parties may become difficult when adjusting to a food allergy or having to take medication on a schedule

Normal emotional/psychological development: If they carry a diagnosis from childhood into adolescence, it can have an impact on behavioural development teens such as becoming more independent and separating from their parents

These disruptions can result in young people with medical conditions often feeling lonely or isolated.

You might not want to tell your kid about their illness, so you do not upset them. However, telling them what is happening in a way they can understand usually makes them worry less. You can help young kids to understand by reading them stories about illness, so they see other kids with the same experiences. Adolescents understand more of what is happening with their health, so they may worry more. They may also want more control over their treatment.

When a young person has a medical condition, often they and their families focus in entirely on their physical health but it is important to look after their emotional well-being too. Young people may need some support with their emotional well-being to handle a new diagnosis. Parents also may need help processing their child’s diagnosis and their own feelings about it.

Young people may need to speak to someone if they are worrying a lot or avoiding things that remind them of their illness. Young people may displace these emotions through acting out in school or having recurring physical symptoms unrelated to illness. These can be signs that they could use some additional support.

If you are concerned that your child is having a difficult time adjusting to a new diagnosis or chronic health condition, the first step is to talk with your child’s medical provider who is supporting them with their health. Paediatric Psychologists are specially trained mental health providers who have expertise in treating adjustment difficulties in children with acute or chronic illnesses.

Within the Northern Trust, this service is the Paediatric and Neonatal Clinical Psychology Services. They can provide support to children and young people living with some long-term conditions:

Paediatric and Neonatal Clinical Psychology Services – Northern Health and Social Care Trust (hscni.net)

Helpful resources:

• https://childmind.org/article/mental-health-in-children-with-chronic-illness/
• https://send.eani.org.uk/support-services/medical-needs

APPs:

• Hospichill –Helps prepare you for going into hospital with a range of relaxation techniques. Available on Apple App store and Google Play store.
• Smile – Smile app helps people with chronic physical health conditions manage their wellbeing using five evidence-based approaches. On Smile, you’ll find content about common challenges like coming to terms with a diagnosis, medical appointments, change of identity, and managing emotions. Smile offers content in written, audio, and video formats. Available on Apple App store and Google Play store.

Functional symptoms/unexplained medical symptoms

Functional symptoms are physical symptoms without an obvious physical cause. They can also be called Medically Unexplained Symptoms or Somatic Symptom Disorder. Almost everyone has experienced an unexplained physical symptom such as a headache, or tummy ache. Usually these symptoms get better on their own, and if they do not, we might seek medical attention. Often we will find a reason for the symptoms, but sometimes we cannot, these are medically unexplained symptoms. Functional symptoms are common with one in four young people experiencing them.

What sort of symptoms can be medically unexplained?

Most common medically unexplained symptoms include:

• Pains in the muscles or joints
• Back pain
• Headaches
• Tiredness
• Feeling faint
• Chest pain
• Heart palpitations
• Stomach problems – pain, feeling bloated, diarrhoea and constipation.

What causes functional symptoms?

A mix of different factors will play a part in functional symptoms starting, continuing and getting better. These are likely to include biological, psychological and social factors.

We often think of our minds and bodies as two separate things. For example, if we have a tummy ache, we may automatically assume that we have a tummy bug. In fact, our brain and body work together and affect each other.

Every day, thoughts, feelings and stresses play a part in making changes in our bodies – for example:

• When we feel embarrassed, we experience flushing on the cheeks
• Feeling nervous can cause a feeling of “butterflies in the stomach”
• When we get upset, we feel our throat tighten – “a lump in the throat”.

We also know that the way we think and feel affects our physical responses.  For example:

• Feeling low or stressed makes any physical pain feel heightened
• Long-term stress can make us more likely to have high blood pressure or a heart attack

Functional symptoms often occur at times of stress or distress. During stressful situations, our bodies might react in different ways. Having a stress response to situations can cause physical symptoms such as:

• Rapid heartbeat and palpitations
• Chest tightness and breathlessness
• Dizziness, faintness and feeling light headed
• Feeling strange or “spaced out”
• Indigestion, feeling sick, diarrhoea
• Tightness in the throat
• Headache, muscle tension and neck stiffness
• Sweating and feeling hot or cold

These physical symptoms of stress can feel very uncomfortable, especially if we do not know why they are happening.  They can make us feel ill.  This worry can cause even more stress and bodily symptoms, making us feel even worse and so on.  This is more likely to happen if the stress remains for a period of time.

Some common stressful events for young people may include:

• Starting at a new school
• Changes in your family (for example a bereavement, separation or someone moving away)
• Experiencing bullying
• Difficulties in school (for example with exams, school work and social pressures)

Even though doctors might not be able to find a physical cause for functional symptoms, you can often identify factors contributing to them. Often a number of issues and stresses come together at the same time, which can then show up as a physical symptom.

A CAMHS clinician or another professional may assess a young person for functional symptoms to give recommendations. However, there may be steps that you can try at home to help your child manage. You and your child’s GP can begin by identifying some lifestyle changes and goals.

Can functional symptoms get worse?

Most young people make a full recovery from functional symptoms. Most functional symptoms can get better quickly and may not need specialist support. For others this journey might take a little longer. However, some young people with functional symptoms may become restricted by their symptoms over time. Some young people may require treatment to get better. Although young people with functional symptoms are usually first seen by GP’s and paediatricians (specialist children’s doctors), in some cases, they may ask a more specialist team to help such as CAMHS.

Some young people benefit from psychological support such as talking therapies.

There are different types of talking therapies that can help. The choice of therapy depends upon the sort of problem and what therapies are available.  These therapies commonly help you to:

• Recognise what seems to make your symptoms worse
• Manage stresses that might contribute to the symptoms
• Develop ways of coping with and living with the symptoms

What can parents do to help?

• Reducing the focus on symptoms. When we focus our attention on our body this can make everything feel bigger or worse! Changing this habit this can take a bit of time, and takes a lot of caution to not dismiss how your child feels

• Once doctors have told you that your child’s symptoms are functional, try to give them a bit of a break from these from medical appointments unless necessary
• Tell people in your child’s network about the symptoms such as: family members, their school and friends

• Gradually encourage your child to resume activities, which they enjoyed before. Be mindful that they are appropriate for their current state and continually monitor this. Be wary of “boom and bust”, which is the tendency to do too much too quickly and then be exhausted the following days.
• Plan regular fun activities that they enjoy and make sure these go ahead even while they have symptoms.
• Encourage open communication with your child. Make time for your child to open up about how they are feeling.
• Help your child to stay healthy. This includes eating a balanced diet, exercising and getting enough sleep each night.

Some helpful links:

https://www.nhs.uk/every-mind-matters/lifes-challenges/health-issues/
https://media.gosh.nhs.uk/documents/Functional_symptoms_F2324_A5_col_FINAL_Sep20.pdf

Useful apps:

• 7 cups – Self-help guides and online support chat. Ages 13+. (Free Aspects)
• Stop Panic and Anxiety Self Help – Learn about the methods used to manage panic and get relief from anxiety (FREE). Only available for Android.
• Mindshift – Anxiety Canada. CBT based anxiety app. (FREE)
• SafeSpot – Promotes positive mental well-being for children and young people, teaching about coping skills. (FREE)
• Super Better – Uses psychology of games to help build resilience and other life skills. (FREE)
• Feeling Good Teens – audios based app for various topics such as muscle relaxation and building self-confidence. Ages 10+. (In app purchases)
• Atmosphere: Relaxing sounds (FREE)
• Anti-stress relaxation toys (Free aspects)
• Calm – Mindfulness app (Free 7 day trial then subscription cost)
• Headspace – Mindfulness based app (Free trial then subscription cost)
• Sanvello – psychologist-designed tools to address anxiety and stress. Ages 14+ with parental guidance. (Free aspects with subscription cost)
• Mindshift – help with anxiety for ages 15+ (FREE)