In living with diabetes, careful and consistent self-management is crucial for successful disease control.
But what happens when behaviors that are essential for preserving health conflict with a person’s own idea of a good and successful life?
Research shows that hiding the disease and, at the same time, neglecting diabetes self-management is a fairly common phenomenon, especially among teenagers and young adults, most often during periods of transition: from primary to secondary school, from secondary school to university, and when entering the workforce.
In the study by Nishio and Chujo (2017), researchers examined how young people experience diabetes, particularly stigma, and the ways they cope with it.
The researchers found that people living with diabetes often dealt with stigma by hiding their condition or “pretending to be healthy” by avoiding insulin injections or blood glucose checks in public. When they did decide to tell others, they usually did so gradually and only to a small circle of people. In situations where they could no longer hide their condition effectively, but still did not want to disclose it, they often limited their social lives, going out less and socializing less with others. They did almost everything they could to keep their illness hidden, invisible, and quiet. But for how long?
The researchers grouped the reasons for hiding diabetes into four categories:
- Hatred toward insulin - because a lifestyle based on insulin therapy, along with all the behaviors and restrictions connected to taking insulin, often creates the impression that insulin controls their life
- Perception of an imperfect body - the idea of one’s own body as flawed, changed, and/or weak
- Perception of oneself as different and excluded from others - a sense of inferiority in comparison with other, healthy people
- Perception of oneself as “pitiful” - a changed self-image compared to the person who was once healthy, or to a person whom society sees as somehow responsible for developing a chronic illness, which can trigger feelings of guilt, shame, and sadness)
This clearly shows that diabetes, beyond being demanding and requiring constant insulin dose adjustments, can also carry an enormous psychological and emotional burden that should never be ignored or minimized.
When a person learns of their diagnosis, their self-image and their perception of themselves as different may change, which is a very important aspect of social functioning. The emotional reactions that most often accompany this are guilt and shame, and very often these emotions remain unrecognized. In short, the cycle usually looks like this: because of the diagnosis, the person sees themselves as different from others and inadequate in comparison to them. The feeling that appears is shame. In order to reduce this feeling, the person turns to behaviors that make it seem “as if they do not have diabetes,” and as a result, they do not regularly or consistently carry out the behaviors necessary for good disease control.
In the short term, this mechanism works because it reduces shame.
But in the long term, because of the consequences of reduced self-care, the issue of the disease becomes even more prominent, often accompanied by criticism from others (parents, partners, friends, healthcare professionals, other people living with diabetes, and even themselves). The natural response to criticism is an increase in shame, and so the cycle repeats and becomes more firmly entrenched. That is exactly why it is so difficult to break out of it.
Interventions aimed at helping individuals should by no means consist of criticism or rational arguments about why it is important to maintain good glucose control. Let us remember: the person does not want to be sick — they want to be the same as everyone else, those who do not have diabetes.
The appropriate response is to validate all the feelings that arise, allow them to exist, and strengthen the person’s sense of self-worth and self-image. Unconditional acceptance by close loved ones, along with a gentle and compassionate approach toward the person living with diabetes, is key in the process of self-acceptance.
The person should be reminded of the many differences that exist in society and of the idea that none of us is identical to anyone else. Our differences do not diminish our worth — on the contrary, diversity strengthens and enriches it.
And when we no longer see diabetes as a flaw, but as a part of ourselves that is simply there, that exists, and does not make us lesser or fundamentally different, then we can confirm the original thought: it is possible to achieve dreams and live a quality life with diabetes, if we allow ourselves to do so.
If this topic interests you, you may also like our article “Diabetes on Social Media”.
Author: Ivona Poljak
