SOMEWHERE TO BELONG BELONG

Knowing

BARTLETT

After being diagnosed with diabetes as a four-year-old, Emily Vuong says she spent most of her youth feeling like she was the only person in the world going through what she was dealing with. While her parents were a great support and helped her live a “normal” childhood, by the time she was a teenager, dealing privately with diabetes had become a source of shame.

“I didn't have any connections with anyone else with diabetes during that time in my life,” Emily says.

“Because there was no one really keeping me accountable, I just wouldn't test or take insulin when I was at school. Every single day, I would come home from school and my blood sugar would be through the roof.”

Although she puts this bout of poor management down to the usual adolescent growing pains, Emily says it wasn’t until she found a community of peers that she developed a more positive attitude to managing her diabetes.

“I did go to a kind of mother’s group when I was younger, where all the other kids had type 1, but we only saw each other a handful of times. Then I started following a few diabetes accounts on Instagram, just out of curiosity, and I saw that there was a whole community of diabetics online from all around the world. It was very inspiring to me how open they were with their own diabetes.”

A 2016 survey by NDSS found that Emily isn’t alone in benefiting from peer support. Adults with type 2 diabetes said peer support helped them access to diabetes resources and gave them the motivation to manage diabetes, while adults with type 1 most commonly said peer support helped to “make me feel like I’m not alone”.

Emily says being able to share her experiences with her online community was empowering – and very helpful!

“It was a real turning point. Other people have a lot of tips and advice that you would just never have time to get from the doctor. And I think just seeing people wearing their medical devices, not trying to hide them but wearing them proudly, just normalised diabetes for me. Growing up, I was the only diabetic at my school, I didn’t see people like me in the media and I didn't know any celebrities who had diabetes. Finally, I felt like I had somewhere to belong.”

Support at home

Deborah Schofield, general manager of health at Diabetes WA, says that finding that “somewhere” can have a profound impact on an individual’s diabetes journey. For some, having an understanding family can make all the difference, for others it will be a network of supportive friends. For many, such as Emily, peer support can be transformative.

“When we talk about support, we’re talking about a number of different levels,” Deborah says. “There’s the connecting with other people who are living with the same condition, because there's a lot that you can learn from each other and you know that they understand what you're going through. But it’s important to remember that there are many ways people with diabetes can find support or be supported.”

Educating the people around you – who may not have had much experience of diabetes – is key, Deborah says.

“In a lot of our programs, we encourage people to bring along a significant other, whether that be their partner, a friend, or a family member of some sort. Because you're living with these people, and it's really important for them to understand what diabetes is all about, and how they can best support you.”

There can be benefits for the family too, given that diabetes management tends to involve a greater awareness of the importance of diet and physical activity.

“In many ways that can be a plus for the whole family, if the family can look on these changes as a positive and say, well, the health of all of us can improve. There may be also family members who, without those changes, are high risk of type 2 diabetes, because their immediate family member has it.” This support can be a double-edged sword, however, if family members play too much of a role in helping someone manage their diabetes.

“A lot of people can sometimes feel judged within their family. It's important to be non-judgmental, because people living with diabetes can make their own choices about what they eat, and they're managing a lot of different things. It doesn't help for others around them to be the food police.”

Finding support

As Emily discovered, family support is crucial in the early years following a diagnosis of type 1 diabetes. Endocrinologist Professor Tim Davis says that the way a family does or doesn’t support a young person with type 1 can determine the course of the condition.

“Ideally, you have a very supportive family that doesn't dominate but allows the young person to develop the maturity to manage their own condition,” Tim says. “Some family support networks can be a bit suffocating for the patients and they don't develop the appropriate level of independence of self-care.”

For young people with type 1, the crunch point often comes in young adulthood, as family support starts to fall away somewhat.

“What tends to happen when people progress out of pediatric clinics into the adult outpatient world is they tend to fall between the cracks. The family support falls away and kids want their independence. Often they don't want their social circles knowing they have diabetes and all that sort of thing.

If you don't have the right support, your diabetes suffers and that's obviously not good for long-term complications.”

It’s easy to underestimate how important support from family and friends is for older patients, whether it’s a partner helping a woman living with gestational diabetes or children caring for an elderly parent with type 2.

“Yesterday, I saw a patient in her late 70s with cognitive issues who lives on her own and is obviously forgetting to take her insulin,” Tim says. “We can try and simplify her insulin regimen so that it's just once a day given by Silver Chain, but that's only Monday to Friday. Relatives, friends, or neighbours have to come in and help at times that are not covered by the community nurse support.”

For those without extensive family or friend networks, the support services offered by Diabetes WA — notably our Telehealth and Helpline — can be a vital point of connection.

“Our helpline is accessible five days a week, so people can call us and have a chat to someone. If you find the phone difficult, you can email us or give us a web inquiry and speak to someone that way,” Deborah says.

Professor Tim Davis says those who might feel lost after an initial diagnosis should be reassured that pathways exist to help them find the support and connections they need. Most people will be put on a care plan by their GP, who will help them find appropriate education resources, start them on medication and connect them to helpful organisations such as Diabetes WA.

“Your GP is your first point of contact and most practices would have a nurse who does care plans and who can help someone get their education sorted out, dietetics sorted out, and start on medications. If things don't go to plan, people like me get called in. But I also work very closely with educators on my complex patients and they’re a very important part of the team, as are dietitians, and we have a clinical psychologist here at Freo that I use quite a lot, especially for younger patients who are not coping well with having diabetes on top of other life stressors. By and large, the Australian system is pretty good at supporting people who need it with diabetes.”

Increasingly, those seeking to find peer support prefer to do so online (even back in 2016, a majority of those surveyed by the NDSS chose virtual networks where available). For Emily, finding her own community of support has transformed her experience of living with diabetes and she encourages others to reach out — even if meeting up in person isn’t always possible.

“I think it's a lot easier for me to be open with my feelings and my experiences if we don’t meet face-to-face, because, yes, we're all connected by diabetes, but that might be all we have in common. We can just talk about diabetes and appreciate that everyone's on their own journey, but that we have that little path we're walking on together.”