How does it feel to be the brother or sister of a child with JA?

It’s fair to say that juvenile arthritis affects more than just the child living with the Laura Hickeycondition and those who are sometimes overlooked are siblings. As an adult living with juvenile arthritis reflecting back upon my childhood, I can see that my disease had a major impact upon my siblings.

The diagnosis, as you all know, can be devastating for the whole family. For my siblings, it wasn’t the easiest of transitions making do with less time with my parents as we got used to this new journey. Regular trips to Crumlin meant that my parents often spent time away from home, which to my sister seemed really exciting. “The big trip to Dublin” was the idea but the reality as you know is far less glamorous.

My siblings are much younger than me so for them it was very difficult to understand, they simply just understood that something had changed. As they got older they understood more and their reaction to me being sick changed for the better. Asking more questions and lending a helping hand when needed, we all began to find the correct balance.

Working with families living with JA, I know that my siblings were not alone in finding a JA diagnosis to be a difficult transition. Siblings often find it hard to understand why little time is left for them.

It’s normal for siblings to feel a range of difficult emotions:

  • Confusion about the overall illness
  • Helplessness
  • Jealousy over unequal parental attention
  • Guilt that they are healthy
  • Fear that they will also get JA

There are lots of ways that your family can cope with the negative impact JA can have on the family:

  • Explain to siblings exactly what is happening. Create an environment whereby siblings can ask you questions. If siblings are young perhaps order a copy of Jasper & Chloe’s Joint Adventure and read it to them. For older siblings maybe go through our JA website juvenilearthritis.ie
  • Another idea is to bring siblings along to the occasional appointment so that they can see the reality of a hospital visit.
  • Make a home physiotherapy exercise plan where all the family participates. This creates inclusive environment for the entire family.
  • Make everyone feel special. Have plans to spend one-to-one time with siblings. Maybe it’s a girls day shopping, a trip to the cinema or a football match. If time is an issue, perhaps taking an extra special interest in their favourite activity or kicking around a football for twenty minutes.
  • During a flare-up or times of stress, it is easy to feel overwhelmed. Take things one day at a time, don’t be afraid to change or adapt plans.
  • Avoid giving the child living with JA too many special concessions. This can cause a lot of jealousy among siblings. For example, find tasks or chores for each sibling to do to ensure that everyone has something that they can carry out.
  • Explain to siblings that difficult emotions are normal and it’s ok to talk to you about these feelings.

If you have any questions or queries about supporting your family, please don’t hesitate to get in touch. Email me at lhickey@arthritisireland.ie or phone (01)6470210.