Siblings coping with sister’s ‘treatments’
Siblings were clearly affected by watching their sibling endure the exercise routine. One sister remembered that she hated hearing her sister cry when she was doing the exercises, and would try to disappear. She wrote ‘I’d go away for a few hours so that I couldn’t hear her. I was very uncomfortable. It sounded like she was being murdered'.
Younger siblings would sometimes join in doing the easier exercises, but often lost interest after a little while. They could leave, but the child with arthritis had to continue.
Sometimes siblings (and possibly the parents) did not understand some aspects of the treatment for arthritis. For example, a few months earlier one young girl with arthritis had been prescribed a medicine called methotrexate, which could cause a well-recognised side effect of mood swings. Her parents said that her behaviour had changed in recent weeks and her moods had become very volatile. She wrote about her sister in her diary:
Her older sister did not know how to deal with this behaviour and tended to argue with her, and generally ceased to play with her. In this family, both the parents and children were not informed about the possible impact of this medicine, and were left ill-equipped to deal with the impact of it. They did not seek help because they believed their child’s new behaviour was just a ‘typical pre-teenager’. Her new behaviour could have been caused by the medicine, but it may not have been: the impact however was that the relationship between the girls became seriously challenged, and they received no information or assistance to cope with it.
Jasmine, whose sister has arthritis, advised siblings to spend more time with friends so that they can escape from the tense atmosphere of the home. She also wrote "I need to be the centre of things sometimes and not just part of the background. I try to support Mum by doing things around the house, but sometimes I feel unappreciated and like I'm an ignored pillar that is straining under the weight of the family's emotions and my own. Mum does try to include me and talks to me a lot about how I'm feeling which helps a lot."
Note for parents
If the children’s behaviour changes, or if a difficulty between siblings develops ask the healthcare practitioner for help and advice. They may refer you to someone with the proper skills and experience to help you and your family deal with your situation.
Tips to help parents support and include siblings
- Include brothers and sisters in a few hospital appointments; they will see how boring the appointments and waiting is, and how uncomfortable the journey and examinations are. They will begin to recognise that the child with arthritis faces many unpleasant challenges, and that their time away from school with the parent are not treats to arouse any jealousy.
- Keep on explaining to children what is happening – what the new medicines, splints, or special equipment are for. Remember to keep on explaining things to them, their level of understanding grows as they mature and so your explanations can deepen too. Some parents do explain things fully in the beginning, but forget to keep on explaining things.
- Create situations when they feel they can ask you any question. If you do not know an answer, you can say that you will ask some one else to get an answer. Remember to get back to them with the answer.
- When time to take medicine, some parents have found it helps if well children feel included if they take a vitamin tablet at the same time (to keep the child well, and keeping to the manufacturers’ instructions). This shows the siblings that they are treated fairly, that medicine does not taste nice, and that medicines are not treats for the sick child.
- Have family discussions and give time to listen to each of the child’s feelings, thoughts and expectations. Research shows that this open, honest communication considerably helps families grow together and cope with long-term illnesses.
