Type 1 diabetes (T1D) is defined as a self-managed, chronic autoimmune disease that occurs when the insulin-producing cells of the pancreas are destroyed by the body’s immune system. Consequently, those living with T1D rely on an external source of insulin for life. The day-to-day management of this disease is exceedingly complicated, impacting every aspect of a diabetic’s life. Individuals must vigilantly balance a number of factors that impact their blood sugar levels including insulin and carbohydrate intake, physical activity, hormones and stress.
It is little wonder that type 1 diabetics often lose momentum when managing their disease. This phenomenon is commonly referred to as “diabetes burnout” and is characterized by “the emotional distress that arises from living with diabetes.”i For some individuals, burnout is experienced as a reaction to the tedious and repetitive management practices of T1D, including daily blood sugar tests and insulin adjustments. For others, burnout takes the form of generalized feelings of anxiety or frustration that result from constant blood sugar fluctuations and attempts to alleviate these. Reactions to this are equally as varied; some individuals may purposely alter their insulin dosages or test their sugars infrequently, while others may experience unrelenting high levels of stress and fatigue. The resulting poor blood sugar control contributes to the development of long-term complications. As diabetes affects all areas of life, burnout may also negatively impact an individual’s personal relationships, socialization, education, career or economic status, as well as one’s spirituality or life goals.ii
A lack of information contributes to feelings of helplessness and anxiety, but as community members share knowledge with one another, they build the confidence and resourcefulness required to overcome these sentiments.
As an initial step for my Master’s thesis, I conducted a series of exploratory, semi-structured interviews with twelve young adult and adult type 1 diabetics to further comprehend the implications of burnout, and to challenge my own assumptions about T1D as a diabetic myself. During this process, I discovered that a number of the interviewees regularly reach out to the T1D community as a way to prevent or combat feelings of frustration, anxiety and loneliness. These participants maintained that type 1 diabetics share an automatic bond simply because they understand the challenges of living with this disease. During my own personal experience of living with T1D, I have gone through various phases of burnout, but at no point had I considered reaching out to this community for support.
In furthering my research, the obvious choice was to adopt a heuristic approach, one that “…explicitly acknowledges the involvement of the researcher to the extent that the lived experience of the researcher becomes the main focus of the research.”iii With this in mind, I continued my exploration by immersing myself in the T1D community. I joined various organizations, including Young and T1 and JDRF Vancouver, as well as Let’s Talk T1D (JDRF Toronto) and Connected In Motion. Additionally, I reached out to numerous online communities including Glu and Beyond Type 1.
- The letter and oath serve as a welcome for newly diagnosed type 1 diabetics to The 1 Club. These artifacts intend to provide a sense of comfort, rather than induce the fear and stigma that is often associated with a diagnosis.
As months passed, I began to recognize the true value of the T1D community. I realized that a type 1 diabetic who is highly engaged in the community is motivated, inspired and empowered by what it has to offer. This individual is more positively and actively in control of his or her physical and mental health, contributing to an increased resilience towards diabetes burnout. This in turn builds momentum, which is crucial to wellbeing and overall happiness.
Increased resilience towards burnout is achieved through knowledge exchange, a growing sense of belonging and psychological support. A lack of information contributes to feelings of helplessness and anxiety, but as community members share knowledge with one another, they build the confidence and resourcefulness required to overcome these sentiments. Moreover, upon diagnosis, a type 1 diabetic automatically becomes part of the T1D community. This connection can potentially provide an individual with a sense of belonging if he or she identifies and resonates with other community members. Finally, diabetes burnout commonly involves feelings of anxiety and depression, which lead to poor diabetes management, thus poor health. This points to the importance of nurturing mental health alongside physical health. The T1D community offers reliable, firsthand advice for overcoming diabetes burnout and its psychological implications.
While I had minimal connection to the T1D community prior to the onset of this research, I discovered that I was not alone in overlooking the community as a resource. Aside from the initial interviewees who benefit from the community, I encountered other type 1 diabetics during this interview process, as well as at clinics and workshops, who disregarded this resource for various reasons. While discussing this phenomenon with them, I discovered that there are two main barriers to community support: lack of awareness of the T1D community and general disbelief in its value. I realized that a gap exists between what the perception is of the community, and what it actually can provide for a type 1 diabetic. This led to the formulation of my design research question: How can design be used to increase awareness and promote the benefits of the T1D community?
While becoming an active participant in the T1D community, I created a series of artefacts that touched on insight pulled from this experience as well as organization websites, online forums, conversations with other type 1 diabetics and further introspection on my part. This constituted a generative research through design practice. The artefacts were presented to a group of individuals, both type 1 diabetics and non-diabetics, for comment and feedback. They included an embroidered image of a pancreas, a zine called Doughnuts and Diabetes, a juice box felt brooch, a model of a clubhouse, and graphic imagery displaying everyday objects juxtaposed with diabetic supplies. These designed objects contributed to key discussions around the T1D community and its members; the lack of visual identity, the importance of physical gathering space, the use of story, concealed meaning and insider’s perspective, and the use of visual storytelling as a vehicle for message. These artefacts helped inform a making practice to be carried forward into the final design concept.
The 1 Club
Two important findings contributed to the final design outcome. First, the automatic bond that exists among all type 1 diabetics is indicative of a club, where membership is inherently granted upon diagnosis. Secondly, T1D is both invisible and secret; it can quite easily go undetected by strangers, colleagues, friends and even other type 1 diabetics. These insights led to the idea of The 1 Club, a secret society for type 1 diabetics.
The name, The 1 Club, was chosen to represent the oneness of all its members, but also to differentiate the T1D community from the type 2 diabetes (T2D) community, as confusion exists between these two diseases. The tagline “Every 1 Welcome” was created to complement the name, emphasizing the exclusivity and inclusivity of the club’s membership. Initial designs for a crest and New Member letter have been used to encourage dialogue around this design concept.
The creation of a secret society allows for a visual language that is simultaneously serious and fun. The hand-embroidered crest draws on secret society iconography. It illustrates the characters of Frederick Banting and Charles Best, the discoverers of insulin, kneeling on either side of a hand with its index finger pointing upwards. An illuminated drop of blood hovers above the finger.
- The crest contributes to the visual iconography of The 1 Club, helping to cultivate a sense of connection among its members.
The New Member letter reads as follows:
Dear 1, Welcome to The 1 Club. Your curiosity has led you to us.
We are a secret society of blood-testing kindred. Hidden in plain sight, until today. This letter recognizes your readiness to self-revitalize.
Strength is in our numbers, but only if we act as 1. It is our belief that our bond is of vital importance to our collective wellbeing. Sharing wisdom is at the forefront of our secret order.
If you agree, lift a finger in honour of our forefathers Banting and Best, and swear to and sign the Oath of Optimism.
The 1 Club
Attached to the letter is the Oath of Optimism:
As a 1 Club member – for all other 1 Club members – I hereby swear to tell my stories in recognition that this timeless tradition is at the very heart of what makes us 1.
As the project continues, both the crest and New Member letter will be used to support a short animation intended to inspire type 1 diabetics to join the T1D community. Story is an incredibly effective vehicle for relaying a message, as it builds an emotional connection between the storyteller and audience. If done effectively, the story of The 1 Club will be used to help direct type 1 diabetics to the T1D community. The film will draw on the community aspects of knowledge exchange, a sense of belonging and psychological support as it works to emphasize the importance of finding new perspective, and ultimately building resilience towards diabetes burnout.
- Given, Lisa M. Heuristic inquiry. The Sage Encyclopedia of Qualitative Research Methods. Los Angeles, CA: Sage Publications, 2008. 3.
-  Young and T1—Unspoken Truths, YouTube video. 2:01, posted by UnderDog Productions, June 2nd, 2014, https://www.youtube.com/watch?v=BPGsvNMXRZE.
-  Vieira, Ginger. Dealing with Diabetes Burnout: How to Recharge and Get Back on Track When You Feel Frustrated and Overwhelmed Living with Diabetes. New York City: 2014. eBook.