The Irony of “Control” in Type1 Diabetes Management
Acknowledging the Impact of Diabetes on Mental Health
It is a difficult thing describing what it is like to live with Type 1 Diabetes. I have had the distinct honour of speaking at length, to hundreds of people managing diabetes every day, and together we still seem to have some difficulty articulating what it is, to live with this chronic condition. The one irony we all seem to understand is that while the medical model’s goal of management is to achieve, and then sustain ‘good control’, those who live with diabetes every day know that controlling diabetes is at best, hit and miss. Many of us seem to share a giggle about having actually tested it at one point or another. We commit to doing the same things, eating the same things, and breathing exactly the same way, for three days straight, and then prove our suspicion that we indeed get three completely different days of results.
The best analogy I have come across to date, will resonate with many of you who have had children. Imagine if you were required to live that notoriously challenging first year with a baby… for perpetuity? Notwithstanding the joy that new babies bring, having a new baby can be overwhelming, unpredictable, and at times ‘pull your hair out’ frustrating. At a minimum it feels relentless. Just when you think you have the baby’s patterns down, the baby’s needs understood, and that you have achieved a new semblance of control, everything changes and you begin again. In my opinion, this is as close as it gets to understanding what it is to live with diabetes. There are of course two fairly impactful distinctions-with regards to diabetes, you have to manage it for the rest of your life, and there are dire health consequences attached to not doing it well.
The irony, not lost on those of us living with diabetes, is of course that control is somewhat of an illusion; in that there is no real recipe one can follow every day, in order to achieve the exact same results. This is part of the reason so many of us have such difficulty meeting the prescribed targets. It is no wonder that people living with diabetes often tend to define themselves by the words “good” or “bad”. The common narrative being that “I have been good or bad”, which is not reflective of the truth.
The medical model unintentionally reinforces this, because it measures the outcomes and not the effort. Diabetes outcomes are measured by the test results instead of the effort that goes into managing the condition day to day. Truth be told, there is nothing illusory about the effort that goes into living well with diabetes and maintaining the life-long motivation so necessary. “Good or bad” test results, the effort is there.
When I think about the fact that we routinely screen all new mom’s for post-partum depression, because as a society we recognize how overwhelming being a new mother can be, I wonder why we don’t routinely screen people living with diabetes. It did not take long, as a health care provider, before I began to see how much of managing Type 1 Diabetes is actually a psychological battle. After all, where on earth does one get lifelong motivation from? It was not at all surprising for me to learn, that the person living with diabetes is twice as likely to experience depression as compared to their diabetes-free peers. It was also not surprising that the prevalence of anxiety, eating disordered behaviour and depression is significantly more common among those diagnosed with Type 1 or “insulin dependent” diabetes. As a student and clinician, I have discovered that the clinical evidence supports my experience.
It was however, quite astonishing that as a health care professional living with Type 1 Diabetes for twenty years, I did not know of the evidence until I went looking for it. It has been difficult to digest that I have never once been asked about my mental health status during a diabetes appointment, never mind being officially screened.
As health care professionals working with those living with diabetes, we are often challenged by the ‘revolving door’ appointments. These are the appointments that seem eerily the same month after month and year after year. As a patient, I understand the ‘grin-and-bare-it’ aspect as well.
We have, however, evidence based tools to assess and address the psychological components so influential to the outcomes associated with managing a lifelong condition like diabetes. Strategies to defend against negative thinking, to increase motivation, personal growth and change; approaches such as Cognitive Behaviour Therapy, Narrative Therapy, and a Solution-Focused Therapy. We can even effectively address the challenge that exists for those living with people who live with diabetes by using a family systems theoretical perspective. This can help family members gain understanding, clarify roles and expectations and get validation and support related to the impact diabetes has on the entire family system.
Surely addressing the mental health of those struggling to live well with diabetes is every bit as important as adjusting insulin doses. How refreshing would it be as a patient to be coached as though every day is the battle that it is? It is possible to change how we all look at life-long diabetes management.
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*** This post was submitted by a true life super hero!
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