Another parent said: ‘There’s no-one there for us at all. We feel it’s almost like living on an island’.

Introduction to recent research about families

One of the most common things families say is that they had never realised children got arthritis, and that now their child has arthritis, they feel very isolated from family and friends while professionals ‘just left them to get on with it’. If this is your situation, you are not alone; thousands of other families are experiencing the same things as you. These include families of children with arthritis and families of children with other long-term illnesses or disabilities. When you read about what other families felt, and what they went through, you will understand even more that you are not alone. The reactions and circumstances of your family to arthritis may be individual, but will include important themes in common with thousands of other families.

If you are a parent of a child with arthritis, or grandparent, friend, relative or professional it will help you understand the whole family if you read about what different members of families have said. We have found that family members often did not discuss with each other how they felt, even when they were distressed, because they did not want to upset each other. While this desire to protect one another is understandable, it could add to the isolation each person experiences.

What’s the remedy? Part of it may begin with sharing with one another your thoughts and feelings. The families’ experiences described in this chapter may be a starting point for understanding how other family members feel and the catalyst for meaningful discussions in your home or work situation.

When grandparents or other relatives cannot help

Many families are not able to ask grandparents or other family members to help, or having asked them receive little help. This may be due to a wide variety of reasons but the result can emphasise the sense of loneliness and isolation for those families concerned. In these instances, it becomes especially important to develop a network of friends, neighbours and professional helpers.

It can be very painful for parents when other family members seem unwilling to get involved or unable to verbalise their support. However, in many families, relatives do not realise the tremendous pressures of caring for a child with arthritis. Sometimes friends and relatives do not know how their help could make a difference so they do not get involved. Instead, they get on with their own demanding busy lives.

The initiative rests with the family of the child with arthritis.

Have you fully explained what life is like and have you asked for specific support or help? Perhaps you think you have explained, but you have spared them from the worst aspects to an extent that they still don’t understand why you need help. Perhaps they do understand, but are afraid to help or don’t know how to help, and turn instead to their own concerns, even expecting you to support them. At www.kidswitharthritis.org website, there are two articles about one family’s experience. Many families have given these articles to family and friends and found that the material opens people’s eyes to daily life of a family caring for a child with arthritis. Try using this material with your relatives, or writing your own description.

If you still find that they make the choice to stay unsupportive, you have two options: you can either forgive them and hope they may change, or you can become bitter and resentful. Both these options involve emotional effort, but only one is constructive.