By Katie Doyle
“I’m not going to cry this time…I hope.”
I could already feel the tears welling up, in spite of efforts to hold myself together in front of my mom, while we drove to my endocrinologist appointment. I was nearly twenty. While almost ten years of life with type 1 diabetes had flown by, a visit to the office without tears seemed an impossible feat.
This memory came flooding back when I participated in a questionnaire for the Your Diabetes Clinic Study earlier this year. The questionnaire is part of a project developed by Lisa Hynes, a candidate in the PhD in Psychology and Health program at the National University of Ireland, Galway. Lisa is taking an innovative look at the attitudes and experiences of patients between the ages of 18 and 30 with type 1 diabetes have with their diabetes clinics. After looking at previous studies and noticing a “lack of research focusing on young adults,” Lisa has developed this questionnaire to collect information from hospitals throughout Ireland and from young adults with type 1 around the world. These research methods take advantage of social media to gather information from a wide audience pool; incidentally, I found out about Lisa’s questionnaire from a Facebook post.
“The purpose of this study is to learn where changes can be made to improve diabetes service for young adults with type 1 diabetes, by understanding the driving forces behind service use. For example, the research so far suggests that the reasons why a young adult might not go to their clinic appointment are complicated and can change over time,” Lisa says via email.
The questionnaire required me to answer questions about my experiences at my diabetes clinic (or endocrinologist, as the service is commonly referred to in the U.S.), as well as my own self-management. It asked me to evaluate my psychological and physiological states in the context of the support I have received. I know from my own personal experience and from talking with my peers that those visits are not always the most positive of experiences.
I’m now in my mid-twenties and have had type 1 diabetes for twelve years. I can vouch for those complicated reasons to avoid going to the endocrinologist: I have shouldered the blame about less-than-perfect blood sugars and A1C results, felt like no one could understand or help me in the face of a relentless chronic disease, denied my role in caring for myself and had no explanation for my actions…just to name a few. Maybe you can understand why it might seem easier to just skip an appointment?
Taking those perceptions into consideration and incorporating questions from a number of sources, including the Diabetes Empowerment Scale, allows Lisa and her team to analyze how diabetes and the experience of care affects young adults psychologically.
Sitting at my computer and clicking away, I found myself feeling overcome with emotion. I felt as if I was being asked to describe very personal aspects of my life with diabetes—things that no one had ever asked me before. I remembered how I felt as though my self-worth hinged upon how well my appointments went, like receiving a grade on an assignment. The questions looked as if someone had put my very own thoughts into writing.
People with diabetes “must plan, prepare, organize, think ahead and think of every possible event and obstacle to make sure that they can take care of themselves, while also doing all of the things they want to do, whether that is going to university, having a family or travelling the world. I’m fascinated by the ways in which people deal with the circumstances life has dealt them, and how and why” people change their strategies for dealing with their disease, Lisa says.
Given all of these demanding aspects of self-care, it may come as no surprise that studies have shown people with diabetes are more susceptible to depression. It’s overwhelming for anyone to handle, especially young adults. Although the link between diabetes and depression is fuzzy, everyone living with diabetes and their loved ones know firsthand the layers of stress that are added to each person affected by chronic disease. A lack of adherence to prescribed treatment is one of the main factors associated with comorbid depression in people with diabetes, further highlighting the importance of a good connection between clinicians and patients.
In the end, the main goal of the Your Diabetes Clinic study is to get better look at what living with type 1 diabetes is like for young adults so that patients can receive the best care possible from their diabetes team. After all of the data is collected, Lisa plans to have some results by the end of 2015. She anticipates that the study will indicate the importance of diabetes teams and young adults with type 1 understanding each other and working together. It’s her hope that the information will better guide clinics on how to approach diabetes care, guiding the conversation toward which strategies are best for fostering a cooperative, supportive team effort during those visits to the doctor’s office.
As for that dreaded appointment years ago, I did cry. But I’ve since learned to better communicate with my diabetes team. I’m constantly learning to place value on my intrinsic worth as a person, not just as a straight-A student in the diabetes classroom. Changing how I view trips to the clinic, as opportunities for support rather than direct criticism of my personal failings, is a paradigm shift that I work toward with each visit. Diabetes care is a team effort, but only if I choose to make it that way.
List of sources (in order of use in article):
Source 1: Interview with Lisa Hynes, PhD Student Health Behaviour Change Research Group School of Psychology NUI, Galway http://www.nuigalway.ie/psychology/health_behaviour_change_group.html
Source 2: Your Diabetes Clinic Study website https://yourdiabetesclinic.wordpress.com/
Source 3: The Diabetes Empowerment Scale: A measure of psychosocial self-efficacy Robert M. Anderson, EDD James T. Fitzgerald, PhD. Martha M. Funnell, MS, RN, CDE David G. Marrero, PhD. Diabetes Care, Volume 23, Number 6 June 2000 http://www.researchgate.net/profile/Martha_Funnell/publication/12477287_The_Diabetes_Empowerment_Scale_a_measure_of_psychosocial_self-efficacy/links/0046351caf8ddec968000000.pdf
Source 4: Diabetes and Depression: Global Perspectives Leonard E. Egede Charles Ellis Diabetes Research and Clinical Practice, Volume 87 2010 http://www.idf.org/webdata/docs/PIIS0168822710000471.pdf