Type 1 diabetes – living with the condition as a forgotten, ‘locked out’ sibling

Author: Rebecca's story | Posted: 10 April 2018

This National Siblings Day, Rebecca Herrett shares her views on the support on offer for siblings of children with type 1 diabetes and why she researched the topic with the view to produce a support pamphlet.

I think there is a lack of support on offer for siblings of children who live with type 1 diabetes.

Rebecca and her brother

My brother has had type 1 for over 10 years. Every day I think about how brave he is. He has had over 28,000 insulin injections and over 24,000 fingers prick tests in his life so far.

However I believe that siblings are the only members of the immediate family who do not receive professional support from consultants, experts or psychologists, even though type 1 diabetes has a massive impact on their lives.

The Project

I decided to complete a college project, as part of my Extended Project Qualification, titled ‘Type 1 Diabetes – Living with it as a Sibling’. I wanted to look into the experiences of siblings of children with type 1 and create a useful publication to assist them.

I produced a pamphlet which used straightforward and easy language to make the content engaging and readable. My priority was to focus on the emotional and family impact of type 1, which I could deliver with less medical jargon.

The Research

I spoke with medical experts, national charities and a cross section of people that had been personally impacted. I wanted to research existing studies, distribute a questionnaire and create an info pamphlet.

I received responses to my questionnaire with an even 50/50 gender split, completed by responders with an age range from nine to 34. The diagnosed sibling had an average nine years with the condition, and their siblings were in the age range of eight to 12 years of age at the time of their sibling’s diagnosis.

The Findings

There were very consistent trends across all participants around a sense of feeling scared, lonely and confused as all of the focus and energy ‘switched’ to their sibling leaving them ‘locked’ out.

Furthermore a lack of real understanding, and ‘air time’ to discuss it, resulted in a direct impact on them through changes to diet, removal of sweets, and a sibling who become more aggressive, emotional and maybe reacted unpredictably in the future as they came to terms with it all themselves.

As I started to explore how family life changed it became clear that some jealousy crept in at one end, to no change at the other. Everyone pretty much agreed that there had been some thoughts of jealousy.

Rebecca’s information pamphlet

There was a sense that in time the siblings forged a closer relationship and could look out for each other in ways their parents couldn’t.

Mums generally were perceived to be a little more ‘stressed’ with Dads demonstrating the ‘stiff upper lip’ to keep things rolling in the right direction for everyone. Mums and Dads both appeared to become more protective of the affected sibling in the other sibling’s eyes.

Siblings called out the level of poor understanding in the world between type 1 and type 2 diabetes and the ignorance that brings to conversations – they generally want better education for all. Younger siblings struggled to understand the mood swings and behavioural changes in their loved one.

Although life doesn’t change completely, many siblings noted how they just had to adjust to injections and taking bloods being part of everyday life. Most siblings commented that type 1 diabetes had brought the whole family closer together, as they had to deal with the condition as a team. It is clear parents play an enormous part in helping the undiagnosed sibling understand what is happening to their brother or sister.

The undiagnosed sibling then generally misses out. Half of my respondents gained considerable support from their parents; half had no support at all.

There is clearly a ‘gap’ in the current process, which should include the undiagnosed sibling more actively; should support parents with education and ensure engagement with health professionals once the initial period around diagnosis has eased.

It is clear from the research that I have conducted, that non-diagnosed siblings do not receive a level of support commensurate with the seriousness and impact of the debilitating nature of type 1 on their sibling, and the extended impact on their existing lifestyle. The disproportionate demand on parents or guardians, to manage not only the challenges of being a ‘new’ type 1 diabetes parent, but also having to think about how to engage and educate a confused and sometimes scared sibling does not feel right or fair. The vast majority of parents will be limited in their knowledge of this topic and will need time to adjust their knowledge and their minds.

It is clear that the impact of this is that siblings receive a very mixed level of support and engagement around this topic. In my survey, 50 per cent of siblings felt their parents helped, and 50 per cent felt they were left to find out about things themselves.

I introduced my information pamphlet to a GP, a medical consultant and specialist nurses and the feedback supported the style, content and presentation of the document. Everyone felt that the content would be useful in the early days of diagnosis for a sibling.

JDRF’s Type 1 Discovery Days, and other similar events, provide an opportunity to meet individuals and families with a connection to type 1 diabetes and share support. Find out more here.

For diabetes care issues Diabetes UK has a Helpline open Monday to Friday, from 09:00 to 18:00. The number is: 0345 123 2399

Clinic Connect volunteer

Living with type 1 diabetes

For support and information on living with type 1 diabetes, for both those with the condition and loved ones, please click the link below. There is information on getting help, learning more about the condition and more useful links.

Click here