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A physical illness is an illness that happens in your body. There are many different kinds of physical illness, and we can’t cover them all here.

The information in this resource will mostly be relevant to parents whose child has a chronic physical illness. This is an illness that goes on for a significant period of time, usually at least a year. A chronic physical illness might not last forever, and can usually be managed over time with medications and treatments. Chronic is usually misunderstood to mean ‘bad’. Instead, it means something that continues for a long time.

Chronic physical illnesses are usually considered ‘disabilities’ by law. Disabled people are entitled to certain rights, benefits and support. We look at these at the end of this resource.

If your child has been diagnosed with a physical illness, it is important that you consider their mental health from the beginning. In this resource we will provide you with advice on how to do this. We will also direct you to sources of support if you or your child are struggling.

Mental health problems are up to four times higher in young people with chronic physical health issues than in those who are physically well. Research has shown that this is the case even for young people with very treatable conditions such as asthma. There are lots of reasons why this might be the case.

Having a physical illness can affect:

• your family life
• your child’s friendships
• their activity levels
• their school attendance

All of these things can affect your child’s self-esteem, and their mental health and wellbeing.

It is important to stress that not every young person with a physical illness will experience poor mental health. Most young people cope extremely well and grow up to be resilient adults. They often have a heightened compassion for others because of their own health experiences.

Some young people will see their differences as something that makes them unique. Most young people will have a mixture of positive and negative feelings about their physical illness over time. This might also change with age or depending on how their illness progresses.

Below we have looked at the things that you and your child might experience if they have a physical illness. These things might not affect you at all, but if you know what they are you will be able to look out for them and respond in the best way possible.

Having a physical illness can affect how children and young people view themselves and the world around them.

Physical health and ability

Certain conditions can limit what children and young people can do. For example:

• if they use a wheelchair or another mobility aid
• if they need to take medication at certain times of day
• if they need to have a lot of hospital or doctors’ visits.

This can cause a gap in how they see themselves compared to their peers and can negatively affect their self-esteem. They may see themselves as different or as being outsiders. Or they might think that their options for the future are limited because of their physical health problem.

Mood and mental health

Having a physical illness can also affect your child’s mood. It might cause them to feel anxious, sad or frustrated.

If these feelings go on for a long time, they can develop into mental health conditions like anxiety or depression. Research suggests these conditions are 2-3 times more common in children and young people with chronic physical health problems, than in young people of the same age who don’t have a physical health condition.

Mental health problems can also negatively impact how your child manages their physical illness. For example, they might struggle to take their medications or attend appointments.

School

Having a physical illness can make it difficult for children to attend school, and can affect their school attendance. This can affect their learning and mean that they achieve lower grades or exam results than they might do if they weren’t unwell. One study found that missing a lot of school was the factor most strongly linked with mental health problems over time.

Unfortunately, children with physical health conditions can also experience bullying. Research suggests this is higher than in children who don’t have a physical illness. Children can also feel uncomfortable sharing how their condition affects them and the help they need with their friends. They might struggle in silence to avoid drawing attention to the fact they are unwell.

Risky behaviours

Your child’s doctor might have spoken to you about ‘risky behaviours’. This is when your child does things that can negatively affect their health or the treatment of their health condition. For example:

• not taking their prescribed medication
• engaging in dangerous activities like using alcohol or drugs.

Research suggests that children with chronic illnesses might be more likely to do these behaviours than children who don’t have a physical illness. There are lots of theories as to why this happens, including:

• a desire to fit in with peers
• looking for a way to make their own decisions, especially if they have had lots of decisions made for them because of their health condition
• wanting to show themselves and others that their physical health condition won’t stop them from doing things.

Being the parent of a young person with a physical illness can be extremely challenging. We know that at times it can be isolating or stressful. This can be particularly difficult if your child’s physical health condition requires you to spend a lot of time managing their medication or appointments, or if they need to spend time in hospital.

As well as being difficult for you and the other adults involved in their care, it can also be challenging for other siblings. They might feel that they get less attention or that they are in some way expected to be responsible for their sibling. This might make you feel guilty, and struggle to know how to balance the needs of all of your children and family members.

Be open and honest

Try to be as open as possible with your child about their feelings. Initiate conversations early on about how they feel about themselves. Acknowledge that being a young person can be tricky already without having to juggle the additional stress of a physical illness.

Be encouraging

As with any child or young person, praise them for their wins, no matter how small. Be especially encouraging when they take ownership of their physical health. For example, when they remember to take their medication without being prompted.

Support their independence

Encourage your child to begin to develop some independence early, when this is safe and practical.

You could offer them the chance to engage independently with healthcare professionals in ways that are appropriate for their age and abilities. When they are very young this might be in very small ways. However, as they get older, they can start to ask questions directly or share their feelings about treatments.

If they grow in confidence, you could consider offering to wait outside of their appointments, at least for the beginning part. Your child might have thoughts or fears that they don’t feel comfortable talking about while you are there.

Try to give them freedom

It might not be possible for your child to do everything that their peers can. However, you should allow them to do what they can, as long as it does not put their safety at risk. Other people might need to help you to make sure that your child can take part in activities and isn’t disadvantaged because of their physical health condition. For example, your child might need extra support or planning in order to take part in a school trip. Your child’s school should try their best to support them to take part.

Speak to a professional

If you are concerned that your child’s mental health is suffering as a result of their physical health condition or its treatments, speak to the professionals involved in their care. Often healthcare professionals are very aware of the connection between mental health problems and physical health conditions. They might be able to help you to access bespoke support. For example a lot of diabetes, cystic fibrosis or epilepsy teams have a psychologist attached to them.

Connect with others

You or your child might find it helpful to make connections with other families and young people with the same or a similar health condition. This is sometimes called ‘peer support’, and your consultant or medical team should be able to tell you where you can find it. For example, there are charities who organise residential trips or activities for children with the same condition. Or there might be a youth worker embedded in the medical team who is aware of these opportunities or part of the team organising them.

Don’t be afraid of asking for more help

Recognise when things are getting on top of you or your child, in particular if you have growing concerns about their mental health. The earlier you ask for help, the quicker things can start to improve for you both. In the next section we have looked at the ways you can get further help.

Your GP

If your child is struggling with their mental health, your GP will be able to offer advice and support. They will also be able to carry out a risk assessment to decide whether or not your child needs support from the Child and Adolescent Mental Health Service (CAMHS). They might be able to direct you to other services or types of support that will be more appropriate.

Depending on where you live, your child might be able to get support from a health psychologist. These are psychologists who understand the links between physical and mental health and illness. They are trained to support people with the psychological impacts of physical illness.

Social services

You might not know that social services play a huge role in supporting families who have a child or young person with a significant physical health problem or disability. They can help with accessing financial support as well as more general support for you and your child. This may include helping you to access respite care if things are very challenging. This is where your child is looked after by someone else for a period of time so that you can rest.

You might also be entitled to certain benefits if your child has a physical illness. You can find out more about this in our benefits, financial support and debt advice resource.

Their healthcare team

If your child sees a healthcare team in the hospital for their physical health condition, this team may be able to help them access condition-specific mental health support.

School

Speak to your child’s school early on if you feel that issues at their school are affecting your child’s mental health. They may be able to make changes to improve things. For example, addressing bullying or helping your child to catch up with work if they are falling behind.

Children with long-term physical illnesses that have a substantial effect on their lives are considered to have a disability, and are protected by law. This means that your school must treat your child fairly and do their best not to exclude them from activities or rewards because of their disability.

Sometimes schools require things of students that are difficult for children with physical illnesses. For example, having a high attendance, submitting homework on time or sitting tests. Your child’s school should make ‘reasonable adjustments’ to ensure that they are not punished for not meeting requirements and can still take part in and achieve at school.

Support groups and charities

Ask your healthcare team if there are any support groups or charities that would be relevant for your child that exist in your area. You could look for these online.

As mentioned previously, peer support can be invaluable for making children and parents feel less alone. We have covered some of these charities in the ‘further information’ section below.

Rebecca, a 15 year old, living with type 1 diabetes.

“I have had diabetes since I was 5 years old. I felt like things should be getting easier as I got older but they didn’t seem to be.

“Last year I got really fed up with everything. My mum wasn’t well so my granny was trying to help me with my diabetes and she didn’t have clue.

“I stopped taking one of my insulin injections. I didn’t think it would make any difference really or that anyone would notice or care. It was one less thing for me to worry about in the evenings.

“I got really sick and ended up in hospital. When I was there one of the diabetic specialist nurses spent some time with me. I hadn’t told my team that my mum wasn’t well and they didn’t know I was struggling with anxiety. She was able to arrange for me to see the psychologist. She was really lovely and seemed to understand me. She spoke to me a lot about my feelings and my anxiety and how I can manage them.

“I still see her but things are a bit better now. I also went on a residential trip recently where I got to meet some people my own age with diabetes. There isn’t anyone else in my year at school who has it so it was great to spend some time with people who understand, especially about smaller things like how it feels when people comment on my sensor in PE.”

• – Contact is a charity for families with disabled children.
• – Young Minds offers advice and support for young people affected by mental health.
• – Papyrus is a charity dedicated to the prevention of suicide and the promotion of mental wellbeing in young people.
• – Shout is a free, confidential, 24/7 text messaging service for anyone who is struggling to cope.

This information was produced by the 网曝黑料’ Child and Family Public Engagement Editorial Board (CAFPEB). It reflects the best available evidence at the time of writing.

Expert authors: Dr Catriona McKay and Dr Katherine Murtagh

Full references for this resource are available on request.