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Growth conditions and impact on mental health and emotional wellbeing

What is mental health?

Mental health encompasses our emotional, psychological and social wellbeing. It affects how we think, feel, and act; the ways we handle stress and make choices; and how we connect with others. Our mental health is not separate from our physical health – both are connected, and each influences the other.

Supporting our mental health is important at every stage of life, from childhood through to adulthood. In our busy world, prioritising our mental and physical health helps us stay balanced and cope with challenges. Understanding and talking about mental health can create a supportive environment for everyone.

How we feel about ourselves and our ability to cope is not static; some days will feel better than others. There may be some times in life when we need more help and support, including seeking out professional help.

The impact of rare conditions on mental health and emotional wellbeing

Living with a rare condition can be challenging both physically and emotionally. The diagnosis of a rare condition can emotionally impact both individuals and their families and affect relationships, finances, work-life, and future choices. The impact of rare conditions can be wide-ranging, so an effect on mood is to be expected. Low mood, anxiety, and emotional exhaustion are all common, and some people may also have suicidal thoughts.

To understand the impact of rare conditions, it’s important to consider the experiences of the individual, their family members, and their context (support, finances, history, etc). The challenges our community have shared with us include:

  • Managing symptoms and frequent medical visits 
  • Uncertainty about your or your loved one’s health  
  • Navigating school and health systems 
  • Lack of understanding or knowledge in others 
  • Feeling different or isolated 
  • Guilt about genetic inheritance, including having not inherited 
  • Compassion fatigue 

Managing these demands can, understandably, leave people feeling low, anxious, worried, stressed and exhausted. Those living with or caring for someone with a health condition may need to find ways to look after themselves and ask for extra care or support.

There are many ways in which families manage these additional challenges when navigating life with a rare condition. It is important to recognise that everyone is different and will take different approaches to looking after themselves. Some of the things people have shared that have had a positive impact for them include:

  • Fostering connection with others, friends, family or parents and young people in similar situations
  • Rest and leisure – rest may mean ensuring you get adequate sleep, but it may also include activities that stimulate, distract and provide enjoyment
  • Little but often, making small changes or adding small, sustainable moments of care, for example, a 15-minute walk each day, and/or 3 minutes of writing or relaxation before bed
  • Families often talk about building resilience. This may be a collection of small or large actions, personal to the individual, such as adapting routines, advocating for yourself, or educating others. These may help families navigate unavoidable challenges and keep living in a way that feels important and meaningful to them

Looking after your own mental health and emotional wellbeing – parents/carers/adults

It’s often possible to improve a low mood by making small changes in your life. For example: resolving something that’s bothering you, getting more sleep, exercising and taking time for yourself.

Recognising changes in mood and your ability to function will help you know when to seek out more help. Symptoms of low mood to look out for might include: 

  • Feelings of sadness
  • Being anxious or panicky
  • Being more tired than usual or unable to sleep
  • Frequently feeling angry or frustrated
  • Being low in confidence or self-esteem

 If you have a low mood that lasts two weeks or more, it could be a sign of depression

Other signs of depression are:

  • Not getting any enjoyment out of life
  • Feeling hopeless
  • Not being able to concentrate on everyday things
  • Having suicidal thoughts or thoughts about harming yourself

Getting support  – parents/carers/adults 

Seeking support if you feel like you are struggling is important. Your GP can be a good starting point. The NHS also has this advice online: Get help with low mood, sadness or depression – NHS. There are also several other organisations in the UK that provide information and resources:

  • Mind – A UK mental health charity with information and support mind.org.uk
  • Mental Health Matters – A national charity with online resources, information and a helpline mhm.org.uk
  • Grassroots Suicide Prevention – a suicide-prevention charity with a range of resources prevent-suicide.org.uk 
  • Carers UK – a free helpline and online support service carersuk.org
  • Rareminds – a rare disease charity that produces wellbeing resources for the rare-disease community rareminds.org including an online wellbeing hub

Our child-growth community have shared their top tips for looking after your own mental health and wellbeing.

Children and young people’s mental health and emotional wellbeing 

Signs that your child could be struggling with their mental health and may need more support could include:

  • Ongoing low mood or lack of motivation 
  • Not enjoying things they used to like doing 
  • Becoming withdrawn and spending less time with friends and family 
  • Experiencing low self-esteem or feeling like they are ‘worthless’ 
  • Feeling tearful, angry or upset regularly 
  • Changes in eating or sleeping habits 
  • Feeling nervous or ‘on edge’ a lot of the time 
  • Having panic attacks 
  • Expressing thoughts and/or intentions of self-harm and/or suicide 

Getting support – children/young people  

The most important thing is to reassure your child/young person and not judge them for how they’re feeling. You can help a child or young person who is struggling by: 

  • Letting them know you’re there for them and on their side 
  • Talking to them by text or on the phone if they don’t feel able to talk in person 
  • Being patient and staying calm and approachable, even if their behaviour upsets you 
  • Recognising that their feelings are valid and letting them know it’s OK for them to be honest about what they’re feeling 
  • Taking them seriously and not avoiding or dismissing conversations about self-harm and/or suicide. See below for where to access additional support. 
  • Encouraging them to talk to someone – especially if they’re finding it hard to talk at home. This might be a trusted relative, someone at school, or an outside organisation, such as a healthcare professional or voluntary organisation 

If you are concerned about your child or young person’s mental health speak to your GP or your child’s clinician.  In a crisis take your child directly to the GP, A&E or call your local Child and Adolescent Mental Health Services (CAMHS) crisis helpline.

The following organisations offer additional guidance and support: 

  • YoungMinds is a UK charity supporting young people and their families with several online resources and programmes youngminds.org.uk
  • Talking to your child about suicidal thoughts can be difficult and feel very daunting. Starting the conversation is the most important thing. Papyrus offer guides on how to talk about suicide and ways to seek support including a helpline papyrus-uk.org
  • Mind has a dedicated young people section on its website, which includes information for young people themselves, plus information for parents, carers and other loved ones supporting young people mind.org.uk

Support from the Child Growth Foundation

The Child Growth Foundation (CGF) provides expert information, advice and support on growth conditions and concerns. If you have any questions regarding the information contained on this page please get in touch with our friendly team through our nurse-led Support Line:

Call: 020 8995 0257

Visit: www.childgrowthfoundation.org/supportline 

Email: [email protected] 

By contacting the CGF Support Line you are providing consent for the CGF to collect, process and store your data to provide you with the information or services you are contacting the CGF about. Read the CGF’s Support Line Privacy Statement for full details.

Please note that the CGF Support Line is not an emergency service. If you require urgent medical or emotional support, please attend your nearest 24-hour accident and emergency (A&E) department. For 24-hour emotional support, please call Samaritans 116 123.

This page has been created with valued input from a Clinical Psychologist.