Tangled up in Type 2 diabetes – by Emma Berry
Emma has chosen to research the emotional difficulties faced by people with Type 2 and how to ease them.
Where to begin?
At some point in our lives we will encounter one or many health-related challenges. It is a vulnerability that we all share. Traditionally, ill health has been thought of as relating to something which is ‘physical’ or ‘mental’. But rarely is it ever that simple. The body and mind are one in the same— if one gets ‘sick’, chances are the other may feel the blow also. Four years ago, if you had asked me about what I thought it might be like to live with diabetes, I would perhaps offer you something along the lines of “dietary change” and “keeping an eye on your blood sugar”, but with minimal understanding of the less visible, emotional impact of the condition.
I became involved in diabetes research with the School of Psychology at Queen’s University Belfast in 2014, as part of a PhD qualification. Quite honestly it was an opportunity which I seized by chance. I had no personal experience of diabetes, and had only really caught a glimpse of what living with the condition is like from friends and individuals I had worked with previously. However there was one thing that I was very aware of—living with diabetes was not easy. I embarked on this research to understand what it is like to have Type 2 diabetes through the lived experience of individuals themselves. I wanted to help individuals cope better with their condition, and I needed to know how.
Emotional distress in Type 2 diabetes is commonplace
Our research aims to explore the main causes of emotional distress among individuals living with Type 2 diabetes, and to work out how best to reduce this distress. To date, my team and I have undertaken a combination of surveys and interviews with individuals with Type 2 diabetes along with their partners/ family members. Along the way we have discovered many powerful truths about the beliefs that people hold about Type 2 diabetes, and also about themselves. Some of the most common struggles people shared included feeling as though they were ‘failing’ with their self-care routine. This often was compounded by fears about developing diabetes-related complications, which gave way to feelings of hopelessness — ultimately people felt a little stuck.
Feeling misunderstood by others such as family, friends or health professionals were other common concerns. Many individuals felt that they would benefit greatly from some degree of emotional support—even as simple as being asked “how are things going for you?” or “how can I help?” instead of being scolded about not hitting their weight or HbA1c target. Many of the people we listened blamed themselves, not only for the hiccups in their self-care routine, but also for developing Type 2 diabetes in the first place. Feeling judged not only by themselves but also by others, made it really quite difficult to open-up about their struggles to cope.
Partners and family members also experienced distress about their loved ones diabetes, expressed through worries about complications, or feeling unsure of how to support their loved one with his/ her self-care. Our research highlighted the importance of being able to communicate with others such as partners about diabetes-related worries, and tackling diabetes self-care as a team.
Trying to make a small difference
With the knowledge and insight gained from our research, my team and I have designed a brief, group-based programme aimed to reduce diabetes distress in people with Type 2 diabetes and their partners/ family members. Crucially, the feedback we receive from individuals who take part will help us adapt and improve the programme. We hope that this type of programme is something that may eventually be integrated into the routine healthcare offered to people with diabetes; to ensure that nobody is left to struggle alone.
Emotional support in diabetes can often be pushed to one side, to make room for medical ‘priorities’. However without a healthy mind-set and a good support team, diabetes self-care can be an exhausting and unrelenting task. Talking to someone about the stresses of diabetes can go a long way to relieving some of the burden experienced by people who live with diabetes (this goes for family members too)—even if a solution isn’t offered there and then Quite simply, it’s about asking and listening.
Personal growth along the way
Very recently I was honoured with the chance to speak at the Diabetes UK Volunteer Conference, Northern Ireland. I can vividly remember attending this conference when I first began my PhD; sitting in the audience and absorbing the inspiring personal stories and research studies and about diabetes. So actually speaking at this very conference over 2 years on was beyond humbling. I have delivered presentations at conferences previously, but have to admit that I was a little terrified about this one, as I knew that I would be sharing my research and ideas with the leading experts in the area—people who live with diabetes. The talk however, was met with a lot of energy and interest. I spoke with a number of individuals with diabetes and health professionals after the talk, who felt that it captured many of the emotional challenges experienced by people with diabetes, which can be very difficult to express and which frequently go unnoticed.
What began as a research project has honestly become something considerably more significant to me. For me this is not merely a research ‘project’, and it is not simply about striving toward a PhD. It is about trying to make a meaningful difference where it is most needed—and not once have I looked back from the day it all began.
(Illustrations supplied by Emma’s brother Daniel Berry)
Emma says: “If you would like to know more about the programme we have developed please feel free to contact me by email (firstname.lastname@example.org), however please note that recruitment for this study has closed.