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Another parent said: 'There's no-one there for us at all. We feel it's almost like living on an island'.
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.
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.
In the Brighton research, it became clear that grandparents provided most families with the most significant ongoing support, and that this support included emotional, practical, financial aspects and advice. Parents nominated grandparents for supplying 'key support' more often than any professional or voluntary organisation. There were clearly crucial moments when important information or advice, most often related to the medical care of the child, came from healthcare professionals, but otherwise grandparents emerged as the unsung heroes. Other research shows that the more social support a family has the more likely they are to carry out prescribed treatment[1] , and this would be another reason for to encourage grandparents to become better informed about childhood arthritis and how to help the family.
The down side of this was that in the families where the grandparents were absent, unavailable, unwilling or unable to help then families were more likely to feel alone in their efforts to meet the daily challenges. One mother said 'in waiting for diagnosis caused a lot of stress between my husband and me and we tend to take our worries out on each as we have no extended family.'
In an informal study by Contact a Family[2] , grandparents of disabled or chronically ill children said:-
'Grandparents often feel afraid and do not quite know how to help or how to get involved.'
'Sometimes it is easier to back off, but if you are flexible and prepared to think around the situation, there might just be something you can do which can make life easier.'
'Sometimes, it is the little things that matter.'
One mother said 'I don't feel I can really trust her (grandmother). I feel terrible saying that. She didn't tell us about our daughter's fall last visit. She gives them sweets and she gives them all the things that she shouldn't have.' Other parents also said that adults who do not know how else to express their concern sometimes showed the children with arthritis in sweets or treats. Sometimes adults treated the child differently to their healthy siblings. Generally, families wanted everyone to treat the children the same rather than 'as if she is something very fragile'.
You may feel you live too far away or too frail to help, your moral support can still make such a difference to a struggling parent. Regular phone calls or letters help to show that you care, even when you are unable to physically help. You still have a invaluable role in supporting the parents and the children: keep going!