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Telling the Truth about Life with Diabetes – Reducing the stigma and offloading the psychological baggage

Anthea Suttor

written by Jaleesa Whitford RN CDE

I first shared this piece in 2017 but thought it would be fitting to re-share as we begin 2021’s National Diabetes Week, with this year’s theme around the ‘Heads Up on Diabetes’ campaign and the challenges related to diabetes-related stigma.

Diabetes is very much a physiological health condition where the body becomes resistant to the production of insulin OR insulin production is non-existent. Insulin is a hormone produced by the pancreas, which helps to regulate Blood Glucose Levels (BGLs) and without this essential hormone, BGLs run too high, disabling bodily functioning at an optimal state unless a lifetime of management is undertaken by the person (their carer/family) with Diabetes.

A typical management plan sees a person with T1DM perform in excess of 1,460 finger-prick glucose checks a year, with the number of insulin injections equalling that, not to mention the numerous hypo (low BGL) episodes that can accompany this on a weekly basis (as a result of exercise, stress, illness, meal types, inaccurate dosing or carbohydrate counting or just life) and the rare but dangerous ED presentations that can potentially arise at any time.

This physical care is what the vast majority of the community see as ‘Diabetes’ but this is just the tip of the iceberg. All people with Diabetes at one time or another have been stigmatised in a way that poorly portrays the life they lead so lets help the community understand what a day in the life of Diabetes is really life, the facets it encompasses and shedding light on why holistic management approaches are key. 

Beyond the drop of blood positioned on the monitoring strip, is the mind. And so much about managing Diabetes involves the mind. In addition to the ‘doing,’ psychologically, the above mentioned person with T1DM makes over 100 diabetes-related decisions every day; Should I have my medication before I go for a walk or after I go for a walk? How many grams of carbs are in this coffee? Is my BG safe for me to drive? They can constantly feel tired from thinking about their diabetes or be troubled by thoughts that their family/friends are continually worried about them. Similarly, the mind of a person with T2DM, may also be switched on 24/7 having to make changes to their life-long learnt behaviours, too often than not frustrated by the social opinions associated to the choices they make at meal times, when not resisting favourite foods.

Team this analysis of constant decision-making, with unruly social comments like, “you shouldn’t be eating that” or horror stories about people with Diabetes suffering from complications such a blindness or lower-leg amputations, and the day in and day out of life with Diabetes becomes exhausting even if the person with Diabetes is an expert in its management.

Despite the initial fear, taking a tablet or administering an insulin injection becomes easier and over time the practical care becomes less challenging. But in its many ways, shapes and forms, effective physical management warrants the involvement of behavioural and psychosocial health aspects that are all guided by one’s self control, self-respect and empowerment. In many cases, it’s the interlacing of these elements that can bring about the psychological baggage and lead to its relentlessness.

So what do we know about psychology and Diabetes?

The statistics indicate that an individual with Diabetes is more likely to develop distress, depression or anxiety symptoms than that of an individual without Diabetes. WHY? Well the answer to that is mentioned above. When Diabetes enters a individual’s life, it doesn’t just come with learning the skill of BGL monitoring and thinking twice about the types of food items one chooses to put in their mouth, but more-so the way an individual functions in its entirety.  The burden that Diabetes self-management places on an individual is obstinate and often without reward.

Whether these psychological impacts are short-lived and infrequent or excessively ongoing, their mental effect has the potential to harm the physical management as a result of the body’s natural responses. 

When the human stress response, also known as the ‘fight or flight response’ is activated hormones (adrenaline and glucagon) are released by the pancreas and adrenal glands to assist the body in coping with this stress. As part of this adrenaline response, comes a release of glycogen (stored glucose from our liver) resulting in higher than normal BGLs (hyperglycaemia). This can lead to difficulty managing BGLs, but also difficulty in thinking, increased irritability, mood swings, sweating and heart palpitations.

Should this pattern of unstable mental health occur over an extended period of time, we may also see increased thirst (polydipsia) and frequent urinating (polyuria), most commonly overnight and expect poorer glucose outcomes and in the longer term, an increased risk of diabetes complications for these individuals. In turn this can then lead to further disappointment, given the instability of glucose levels and overtime can become a vicious cycle, resulting in sub-optimal quality of life and increased risk of diabetes distress, anxiety and depression.

In the recent years, the Diabetes healthcare team have developed many tools, such a questionnaires and screening guides, as part of the diabetes education process. These tools help healthcare teams to become Aware that Diabetes can have psychological impacts, encourages healthcare professionals to Ask about such stressors on a regular basis, Assess and Advise should psychological impacts be identified, then Assist by developing individually-tailored plans and Arranging appropriate follow-up and continuity of care so better management is both promoted and enabled. 

Typical signs that can indicate a person may be experiencing diabetes distress, diabetes burnout, anxiety, or depression could be;

Not all people with a period of impaired psychological state will require specialised services and support however the asking, and assessing is essential. We all have periods in our lives when we are feeling less than we usually would, fatigued and fed-up, and our day-to-day coping mechanisms are tested. It is important that we acknowledge these times and treat ourselves appropriately. Take time out to breathe and relax. Trying strategies like; having herbal teas, listening to calm music, reading, practicing meditation or mindfulness, taking a walk or performing yoga, can be beneficial in improving mental state and sleep patterns.

Understanding how and when to implement appropriate management strategies is the key. Should these feelings not resolve with simple strategies in due time, it is vital to engage with your healthcare team. Management plans can then be tailored to the needs of each individual, ensuring that that they feel supported and that there is a light at the end of the tunnel. Keeping in mind that BGLs are generally hyperglycaemic (higher than target) at these times, so increased education, review and support from the diabetes team may be necessary to regain confidence, better stabilise BGLs and remain safe during this time.

As the statistics indicate, psychological health conditions are more common in people with Diabetes than those who don’t have Diabetes, and this means that if you are feeling like any of the above signs or descriptions any of those symptoms, please know that you are not alone.

To alleviate the stigma associated with our mental health we need to recognise symptoms and speak up. Speaking up normalises this conversation and supporting one another empowers individuals the courage they need to seek advice so that they can be the best version of themself that they can be.

Tips for health professionals and people living with diabetes;

Tips for the community who know or care about someone with Diabetes;

Self Support Options

If this has spurred any thoughts of concern with you or find this relates to you, please speak with your health care team. Additionally, below lists support services that can be accessed at your need;

Etiquette Resources:

Books & E-Books:

Videos:

Diabetes and Mental Health Support Centres:

Information:

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