The relationships held between brothers and sisters are unique, but also complicated and ever changing. When this relationship also includes a rare genetic condition the relationship and broader family dynamic can become quite different in positive but also not so positive ways.
I grew up with an older brother and the bond between siblings is unlike anything else, and it can be a real journey to accept what that bond is once you mature into it. Because it's not always what you want. It's not always what you expect. It's not always what you imagined or hoped. But it's the most important thing in the world."
The health and wellbeing of siblings can at times be overlooked due to the effect of chronic health conditions of a family member. The higher caregiving demands placed on parents may results in siblings and other family members receiving less attention. This can often lead to siblings feeling that they are unimportant and even neglected. The constant disruption to their life due to the frequent hospital or doctor visits for their sibling can also cause anxiety and frustration for them.
Siblings of children with chronic conditions, like NF, may also hide their distress from their parents/carers to avoid adding more pressure and stress to their parent’s plate. They may feel guilty about having these feelings and may feel that they don’t have the right to complain when their sibling is unwell or requires additional care.
Siblings may feel:
- Anger towards their parents because they feel ignored, or their needs are unimportant
- Resentful towards their sibling because they have to do more of the chores around the house and they receive less attention than their sibling.
- Guilt because they are healthy and can-do things their sibling cannot. As well as experiencing resentment /anger towards their family members
- Nostalgia for a time before the sibling was unwell or for a time before the sibling was born
If your child is experiencing these feelings, it can be very stressful for them, and they may not know how to express their emotions to you. Some signs of concern to look out for include:
- Changes in routine - in sleep patterns/waking up in the middle of the night or change in appetite.
- Physical symptoms - such as stomach pains, nausea, headaches, or tension.
- Behavioural changes or fluctuating moods.
- Regression - returning to past behaviours that they had already outgrown.
- Difficulty in education - trouble completing schoolwork or pushing themselves too hard.
If you are concerned your child is experiencing distress due to their siblings' condition, there are some things you can do to help them managing their emotions.
- Find balance between the needs of your child with NF and that of your other children.
- Spend some one-on-one time with each of your children
- Find an activity or interest that you and your child can bond over
It is also well known that brothers and sisters of children with a chronic condition who are kept in the dark around their siblings' diagnosis can result in an increased level of anxiety. This is because children are fearful of what they do not know and may overestimate or misunderstand their brother or sister’s diagnosis. Therefore, the best thing you can do to help your child who may be experiencing this anxiety is to include them in their siblings' health journey in an age-appropriate way. This may include:
- An explanation - go through the sibling’s diagnosis and what kind of things to expect in an age-appropriate language.
- Opportunities for questions - let your children ask questions and answer them as honestly as possible.
- Bring them to doctor appointments - allow your child to listen or participate in the conversation if appropriate.
- Acknowledgment - recognising their anxiety and fear that surrounds the diagnosis and reassuring your child where possible.
- Inclusion in decision-making - this is for your older children. You may want to involve them in any decisions that are made surrounding the diagnosis.
Siblings Australia is a good source for more detailed information about the effects of chronic conditions and disability on siblings at various life stages. We also have an information sheet “Talking to Children About Neurofibromatosis”
Books such as “The NF Hero” which you can download, or purchase may also be useful to help explain NF to younger children.