What if you could prepare for a diagnosis of type 1 diabetes instead of being blindsided by it? This puts me in mind of the expression “To be forewarned is to be forearmed”. Until recently, type 1 diagnosis was not predictable; people were diagnosed based on symptoms of hyperglycemia. So one would start their disease experience unwell. Well, we now have ways of screening for type 1 diabetes that could offer time for preparation. We refer to this as a ‘soft landing’ into type 1 diabetes; just as pilots prepare for landing well before touchdown, screening gives you and your family time to prepare for T1D.
Contrast this to the sudden diagnosis of type 1 diabetes (T1D), which is jarring to say the least. Without the ability to prepare, a diagnosis is most often experienced as a life-defining moment that often occurs in the context of a medical emergency. If you were suspected of having T1D, you would be immediately sent to the emergency department. The symptoms that may subsequently lead to a T1D diagnosis are associated with elevated blood sugar levels. When this occurs, you may be at risk of diabetic ketoacidosis (DKA), a medical emergency which further adds to the trauma.
Screening for type 1 diabetes could be a game changer for those at risk. People with a family history, specific age groups (ages 2-4, 6-8 and 10-15), people living with or having a family history of an autoimmune disorder, or those who are identified as having prediabetes might all have the opportunity to prepare by early screening.
Why would a diagnosis of T1D be traumatic?
A diagnosis of type 1 diabetes can feel life-altering, arriving suddenly and creating intense stress for individuals and families—especially when a young child is involved. Life as you know it changes from one moment to the next. Living with T1D requires constant attention, as you must take over the pancreas’ job of regulating blood sugar through insulin, monitoring, and daily adjustments.
While modern tools and support help people with T1D live full, healthy lives, managing the condition still requires ongoing vigilance and can take an emotional toll. Because T1D develops gradually, new screening tools now offer the opportunity to prepare emotionally and medically, raising important questions about whether knowing early empowers people or increases anxiety.
In this article, I explore this issue from a psychological perspective. I highlight the ways we can support people to seek out screening and use the results in an empowering manner.
Is screening for T1D a positive or a negative thing?
As diabetes professionals learn about the potential for screening for type 1 diabetes, we can identify a number of benefits. These include:
- Time to emotionally prepare
- Potential access to medications that delay onset
- Reduced risk of DKA at diagnosis
- Opportunity to educate family and build support systems
- Access to clinical trials and emerging therapies
And, at the same time, we are concerned about potential anxiety during the waiting period and the emotional weight of knowing before symptoms appear.
If we think about how people in the public would react to the possibility of screening for type 1 diabetes, two questions will help us determine how to get the most benefit from screening for diabetes.
Question 1: It all makes sense to me but why doesn’t screening feel like good news?
In diabetes management, healthcare providers focus primarily on evidence (knowledge) and action (behaviour). Would it surprise you to know that human behaviour is more powerfully influenced by emotions than by logic and knowledge? That’s why understanding emotions can be extremely helpful when considering screening for T1D. If you understand your emotions, you can better manage those emotions.
Are We Rational or Emotional?
Human behaviour is shaped by two brain systems. The emotional system operates automatically and instinctively, driving us to avoid discomfort—so avoiding or delaying action when diabetes feels overwhelming is a normal response. This helps explain some of the challenges in diabetes self-management, where effort often comes before benefit. The second system, located in the frontal lobes, is the rational and logical part of the brain. It requires more energy to use and tires easily. This system helps us understand why early knowledge of type 1 diabetes risk can be valuable. Because emotions often outweigh logic, recognizing that screening may stir strong emotions is an important step in managing them effectively.
Assessing Emotional Reactions
A simple way to understand emotions is to examine the experience that precedes them. What do I mean? The experience of threat leads to the feeling of anxiety. The experience of loss leads to the feeling of sadness, and the experience of unfairness leads to the feeling of irritability/anger.
When we understand how a person experiences screening for T1D (as a threat, a loss, or as unfair), it is easier to make sense of their emotional reaction. Is there any aspect of threat to screening? Of loss? Or of unfairness? I would suggest these are common experiences.
Question 2: How does understanding your emotions help you cope?
When I speak about the connection between a person’s experience of a situation and their emotions, I am describing normal human emotions. One of the best ways to cope with these emotions is by recognizing them, finding ways of expressing them and, ideally, having support from others in managing them. This is what we mean when we speak about working through feelings. Think of a person who is grieving. It would be unhealthy for them to try and ignore grief, and it would be insensitive for loved ones to ignore their grief. We recognize the impact of the loss, we provide support for the person to express their feelings, and we stand by them as they struggle to make meaning of their lives and move on.
This advice is helpful for all emotions. As a Psychologist, I like to remind people that where they start is not where they finish. So, a person who responds to the offer of screening with fear, sadness or anger can be supported to express and work through their feelings.
The first step is to recognize and accept the feeling. Ironically, expressing emotions can help to vent the negative feelings and give you perspective (allow time for the logical system to get active). As well, reaching out to trusted others who can be supportive of your feelings can be very helpful; family and friends and healthcare providers can provide a much-needed shoulder to lean on.
There is another perception that we have yet to mention. While the perception of threat, loss and unfairness lead to negative emotions, the perception of hope and opportunity lead to motivation and optimism. It may be rather bold, but as a Psychologist I believe that screening for T1D should come with some emotion management support. If we anticipate that the initial emotional reaction might be distressing, we can take action to support this working through from distress to hope.
How do I cope with the screening results?
People cope with distress in three main ways: action-focused, avoidant, and emotion-focused coping. Screening for T1D supports action-focused coping by giving people time—a “soft landing”—to pursue treatments that may delay onset and to prepare emotionally and practically, potentially reducing the risk of DKA at diagnosis. Avoidant coping, such as “I’d rather not know,” is understandable, but early knowledge can lessen trauma and increase a sense of control. Emotion-focused coping involves expressing feelings and seeking support.
No single strategy is best; people use different approaches at different times. If screening is being considered, recognizing your emotional response and discussing it with loved ones and healthcare providers can help guide decisions. Online communities—such as BreakthroughT1D, T1D Exchange, Beyond Type 1, and Diabetes Canada—can also offer valuable support. Taking time to express feelings at your own pace can help balance avoiding, feeling, and taking action.
Coping is an active process, and where you are today is not necessarily where you will be in the future. The chance to prepare can support emotional adjustment, active coping, and access to emerging therapies that may improve life for those affected by diabetes. As experience with T1D screening grows and treatments that delay or prevent onset continue to advance, a social norm is likely to develop in which people with lived experience offer supportive guidance to those considering this important assessment.
I encourage you to start this important conversation with your healthcare provider today.
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