I was diagnosed with type 1 diabetes on February 25, 1994, at the age of eight. I had been suffering from the typical diabetes symptoms: constant thirst, frequent urination, and lack of energy. My mother concluded I had a urinary tract infection. After our visit to the pediatrician and subsequent admission to the children’s hospital, it was clear that something much larger was happening. My life had changed forever.
My childhood, adolescence, and transition to adulthood all presented unique challenges to me as a diabetic. Upon reflection, I realized it was my adolescence that was a particular struggle and this led me to ask why. What is it about adolescence that makes it more difficult for those suffering from a chronic illness? While reflecting, I recognized one factor that influenced my struggle for independence and normalcy as a teenager; it was my insulin pump.
The recent increase in prescription of insulin pumps for daily diabetes care has lead to an increase in control and positive medical advancements. “[Insulin pump] use has increased dramatically, from 15,000 patients in 1993 to over 81,000 patients in the US at the end of 2000” (Bode, 2002, p.S14). It has been well researched and documented that the insulin pump provides better glucose level control in type 1 diabetes when compared to injection therapy. This being said, there is limited research as to how the expanding prescription of insulin pumps to the adolescent population, specifically females, may be affecting their psychological development at this crucial period. Research has shown the female adolescent population to be highly prone to body image and self-esteem issues regardless of compounding factors such as wearing an insulin pump (Battaglia, 2005). And the loss of control over their body can affect a diabetic’s self-esteem and cause anxiety and stress (Loughrey, 2010). “Psychological distress, depression and other related adverse outcomes of type 1 diabetes are well documented in patients and their families” (McMahon et al., 2005). Given all this, wearing an external representation of chronic illness may have a subsequent effect on the self-esteem and body image of those adolescents wearing it.
I have been wearing an insulin pump since age 15, and for the last 12 years I have been blessed with better glucose control and vexed with the constant addition to my belt. My own personal experiences led me to conduct a study, whose objective was to produce a partial life course description of the meaning and experience of wearing an insulin pump for adolescent women. Further information about their struggles, needs and priorities were assessed. The specific psychosocial factors that have been determined as particularly relevant to this group are self-esteem and body image.
Since self-esteem and self-efficacy have been closely correlated with glycemic control, it is particularly important to discover any relationships between these women’s perceived body image and self-esteem, as it may relate to their medical care (Rubin & Peyrot, 1999). The importance is thereby further emphasized as glycemic control in adolescence has been shown to have a strong influence on later complications.
In my study, 12 participants between the ages of 12-28 were given a semi-structured interview which provided the solid grounding needed to ensure a common basis to the interactions, but allowed for additional knowledge to be gained through personal interaction with each individual. The hope was to gather not only an understanding of each individual, but also an overall group experience, essentially, “how human beings make sense of experience and transform experience into consciousness, both individually and as a shared meaning” (Patton, 2002, p. 104).
The findings of my study have been varied and encouraging. The participants were a diverse group with one commonality: incredible emotional strength. The reactions to their own bodies, to wearing an insulin pump, and to maturing ‘differently’ in a society of conformity, however, all varied. There was an encouraging sense of community among the adolescent type 1 diabetics whom I had the opportunity to interview.
The major themes that emerged were an increased level of maturity seen among all participants, increased awareness of one’s body, and a positive reflection on increased flexibility in their daily lives gained through wearing an insulin pump. The minor themes included: more control afforded by the pump, struggles with relationships, varied self-esteem, and a lack of societal awareness. The results of this study suggest that the insulin pump is an overall positive addition to diabetes care for adolescent females in terms of their psychosocial health. However, the results also reflect an overall lack of and need for social and psychological support for this cohort.
Throughout the interviews, the participants sougt out opportunities to reflect on the positive aspects of their diagnosis. One young woman reflected that she felt it had made her “wiser” and “a lot more appreciative of a lot of things than other people her age.” Although these attributes may seem positive in many ways and may be of benefit to these participants in many situations, one wonders whether there is a loss of innocence and of the ‘invulnerable self’ much earlier on with a diagnosis of type 1 diabetes and how this is affecting their development.
Although there was a resounding positivity in the interviews and in the participant’s reflections, there seemed to be a tinge of cynicism in each of them as they acknowledged the added baggage they have been given to deal with and, regardless of the perceivable benefits, ultimately the difficult and painful daily experiences of living with chronic illness. One participant summarized this feeling in reflecting on the common belief within the medical world that a cure is on the way and the misunderstanding within society that new technologies and advancements in research are inline with a cure. “[They say] there will be a cure right around the corner. The corner was years ago, no one really understands. Yes research is always good news but the day to day is what we live in. Ten years might seem like its right around the corner for this kind of disease but in living with it, ten years can seem like a lifetime.”
This daily struggle can take a toll on all psychosocial aspects of an individual’s life, leading to increased levels of depression and anxiety among other psychological complaints, and is not always accounted for within the realm of diabetes care. This lends itself to the idea that even those who are in ‘perfect’ control of their disease and may be avoiding the major medical complications may be suffering psychologically. The implications in terms of anxiety, compulsions, perfectionism, avoidance, and unhealthy expectations of oneself are enormous in this ‘healthy’ or ‘well-maintained’ group of patients.
As I began my work on this study, I understood there is an inherent difficulty in studying a subject so close to one’s heart. There are emotions involved and impartial evaluation might seem impossible. There is a deeper level of understanding of the phenomenon, though, an unrivaled dedication, and a natural rapport with participants who saw me as a peer rather than a professional. As was reflected in this study, these professionals in the field of medicine are respected for the most part and there is an understanding that they have a high level of education into type 1 diabetes, but that there is a distinct difference between learned knowledge and lived or experiential knowledge. For now, one thing is certainly clear: the focus of the medical community is on those patients who are in poor control and not on the entirety of the experience of being a type 1 diabetic. Psychological care, unfortunately, is not a priority for the medical community in their care of type 1 diabetes.
While my own experience as an adolescent wearing an insulin pump was the inspiration for this study, the expansive nature of the results and the surprisingly varied experiences of each of these participants prove that my work is much needed. I did expect that self- esteem would be more affected than it was, and equally so, body image. This limited effect on self-esteem may be the result of response shift bias or of these participants being hesitant to disclose their frustrations to another diabetic who may outwardly appear to be doing well. However, this may also be a result of the focus of this study on insulin pumps and not solely on diabetes; since it has been shown in other studies that diabetics do tend to have lower self esteem than their non-diabetic peers.
This idea is promising for the use of the insulin pump in emotionally fragile populations, as it does not, at first glance, appear to compound lower self-esteem. The results of this study have only further solidified my belief that psychological care must be a component of a comprehensive treatment plan for type 1 diabetes and that social support is one of the most beneficial treatment methods outside of the medical setting. The participants who were more involved in not only their own care but within the type 1 diabetes community seemed to be not only better adjusted but also encouraged and dedicated. As I have grown over the past 18 years with this disease I have found that the more I learn and share with others, the better I understand my own disease, psychological complications, and the more encouraged I feel for the future of diabetes care as a whole.
Ashley Tullman was diagnosed with type 1 diabetes 19 years ago. After spending a solid portion of her childhood and her entire adolescence fighting the disease, Ashley decided to try to get along. She has now chosen a career in clinical health psychology with a planned emphasis on the psychological impact of chronic illness (once she finally finishes her doctorate in August 2013). Ashley is happy to share her knowledge, experiences, and advice (psychological or otherwise) and loves to connect with other 1s- so feel free to contact her: ajtullman [at] gmail.com.
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