Supporting the siblings of children with hypermobility syndromes
- Julie Hyans
- Jun 10
- 4 min read
Siblings can play a huge role in the life of a child with a Hypermobility Syndrome and for those siblings who do not have a Hypermobility Syndrome, there can be challenges. So how can we support them whilst they play an active role in caring for their loved ones?
Firstly, let’s look at ways these siblings can be affected. The child living with a chronic condition will often need more time and attention from their parents, which can lead to siblings having feelings of isolation, jealousy, being less important, exclusion and concern about what is happening. This can lead to them being clingy, unsettled, upset or angry.
How can you help with those feelings?
It is crucial to keep lines of communication open. Explain to the sibling what is happening using age-appropriate language. You know your children best and that will you help gauge the balance between honest communication and giving too much information resulting in over thinking and therefore worrying.
Make sure you schedule some regular 1:1 time with each of your children and this will help with those lines of communication, make them feel valued and secure. Remind them that you appreciate their help and how special they are in your family. Ensure that your child knows that they have a choice as to how they want to support their sibling. This will help manage their expectations.
When you have a child with health challenges you may instinctively lean towards indulging them with their favourite things to help them feel better, that might be more screen time, a movie, treat foods, extra cuddles etc. If siblings can be included, especially young children, feelings of jealousy or unfairness are less likely to be an issue.
Being the parent of a child with health issues can be overwhelming and there will be times when you feel angry, worried, exhausted or overwhelmed. This is perfectly normal, but if you are having a difficult time, be aware that your children are likely to pick up on this, be honest and explain how you are feeling. This will reassure them. What they are imagining in their head is likely to be far worse than what is actually happening. Siblings of a child with a chronic illness will often become an emotional support for other family members and in taking on those worries will need the opportunities to help understand and deal with, often, complicated emotions. Celebrating achievements and acknowledging feelings, both positive and negative, will help the whole family feel valued and supported.
Support at school
Talking to your child’s school will help. Primary schools (ages 4-11) have Emotional Literacy Support Assistants who are specially trained to help your child navigate through any emotional difficulties they may be experiencing. Initially have a meeting with the school Special Educational Needs Co-Ordinator (SENCO) and ensure that they are aware of the level of care and support your child’s siblings are giving at home.
Other schemes and support groups
If you feel your child’s sibling is taking on a lot of care duties and struggling, there are local support schemes for Young Carers.
The Carers Trust and The Children’s Society define a young carer as: “A person under 18 who provides or intends to provide care for another person. They often take on practical and/or emotional caring responsibilities that would normally be expected of an adult.” Young people aged between 14 and 25 are sometimes referred to as young adult carers, but definitions and terminology appear to be interchangeable. Young carers provide regular and ongoing care and emotional support to a family member who is physically or mentally ill, disabled or misuses substances. While many children and young people provide everyday help to family members, what distinguishes children as a young carer is that responsibilities persist over time and are important in maintaining the health or wellbeing of a family member (The lives of young carers in England Qualitative report to DfE, 2016).
In my role of Support Group Leader with the HMSA, over the years, I have supported families whose child has taken on a caring role to a parent or sibling. I have seen these children thrive with the support of Young Carer schemes in their local areas. Young carers organise activities to allow these children to focus on being themselves without the worries that their home life brings. As an example, my local Young Carers group, Eastleigh Young Carers, support children and young people between the age of 8 and 18 and offer the following types of support:
Activities
Exploration workshop
Youth clubs
Family days
Home visits
Information and signposting
Life skill workshops
Peer mentors
Residential breaks
School drop-ins
School assemblies
Training
One to ones
You can find your local young Carers Scheme by contacting your Local Authority.
Other organisations which might be useful include:
We also have an online hypermobility awareness weekend on the 28th-29th of June, with a range of free online information and support. You can find the events here: