Online discussion groups and blogs about type 1 diabetes
Online discussion groups and blogs seem to be widely used by young people with type 1 diabetes. Young people looked online for information and support...
Having a child or teenager diagnosed with type 1 diabetes has an impact on the whole family, brothers, sisters, grandparents, and most of all on parents. It doesn’t necessarily mean that diabetes changes the way family members feel about each other, but it can affect family routines and can at times make everyone more tense and emotional. Here young people talk about how their families responded to their diabetes, and how it took time for some families to learn to cope without ‘stressing out’.
Generally parents were said to take different roles and responsibilities. Usually both parents provided support and encouragement, but most young people said their mothers got more involved practically and emotionally than their fathers, several of whom were described as ‘distant’. Young people talked about how much their parents had been upset by their diagnoses, especially at the beginning.
At whatever point young people were diagnosed with diabetes, most said that initially it was their mothers who helped them learn how to look after themselves. Mothers usually took them to the diabetes clinic for checkups and kept in touch with nurses and consultants. Many young people said their mothers used to do all their injections and several described how difficult it had been for their mothers. Once they felt they knew what they were doing, most young people said that they wanted their mothers to ‘back off’ a bit and let them be more independent.
In many instances young people said their relationship with their parents and families changed after they were diagnosed and that they became even closer. Several young people commented on how certain members of their families seemed to know instinctively when they were ill, sometimes even before they knew it themselves.
Parental worry and anxiety could lead to problems and strained family relationships. Some young people said that they felt they wanted to protect their parents’ feelings and so chose not to talk to them about diabetes. Other young people said that they went through times when being diabetic made them feel moody and angry which they knew had made them difficult to live with.
Looking back on their teenage years, many young people explained how they had wanted to take more control of their diabetes and be allowed to make decisions for themselves, even if that meant making mistakes sometimes. (See also ‘Managing diabetes as a teenager’). Working out how to take responsibility away from parents could take time and often depended on when the diabetes had occurred: those who were diagnosed as children were more used to their parents having control, whereas those who were diagnosed from the age of about 16 said they wanted more freedom and autonomy. Even if they had argued with their parents, most people said they seemed to understand each other better as time went on.
Relationships could also become strained when the young person’s blood glucose levels fluctuated especially when parents responded by trying to take more control or give advice. Several young women talked about their experience of eating disorders and how they had stopped taking insulin. One young woman said she knew how secretive she became towards her family as she struggled with her diabetes and her eating disorder.
Most described their relationships with brothers and sisters as ‘normal’. Those with older sisters said they were generally very supportive. Others said they appreciated having brothers/sisters who recognised when they were ‘going hypo’ and who knew exactly what to do, including giving them injections if necessary. Young people pointed out that as they grew older their relationships with their siblings had improved and that diabetes became less of an issue. But younger children could feel ‘left out’ as parents attend to the needs of their siblings.
Online discussion groups and blogs seem to be widely used by young people with type 1 diabetes. Young people looked online for information and support...
Here the young people interviewed talk about how they fit diabetes around their own life activities as far as education and work are concerned and...