When a child gets a type 1 diabetes (T1D) diagnosis, the news can be unsettling to both the child and their parents. The diagnosis usually follows a sudden onset of symptoms (e.g., thirst, weight loss, frequent urination) or unusual behaviour (e.g., fatigue, restlessness). These symptoms can be a cause for concern for the family, but are often underplayed at first (e.g., “It must be a growth spurt!”) or misdiagnosed (e.g., mistaken for stomach flu or stress). If left untreated, they eventually lead to diabetic ketoacidosis and more serious symptoms (e.g., vomiting), until the diagnosis of type 1 diabetes is confirmed.
While it may be a relief to understand what caused the symptoms and the unusual behaviour in the first place, the diagnosis also represents a harsh reality: your child’s life will never be the same again, and there’s no roadmap for this new adventure they’re embarking on.
Reorganizing your family life
It’s almost impossible to understand and imagine what life with T1D is like unless you experience it. Once you do, the (false) idea that T1D is “not a big deal” and easily managed by avoiding this or that food, or being more active, quickly gets thrown out the window.
Right after the diagnosis, you get saddled with many care requirements (e.g., checking blood sugar levels, administering insulin) at all hours of the day and night, and the weight of the mental load associated with managing T1D (e.g., worrying about not doing this “right” and causing potential complications, managing medical appointments).
Some aspects of your family life need to be reorganized around a new daily routine and new responsibilities (e.g., who will take time off to go to appointments, who will be in charge of T1D-related tasks), while taking into consideration everyone’s emotions. All of a sudden, you become your child’s “caregiver,” and that sometimes involves causing pain (e.g., measuring capillary blood sugar, injecting insulin) or enforcing limits (e.g., when they’ve had enough candy, when they need to get out of the pool because the sensor is peeling off or because their pump has been disconnected for too long).
For some time after the diagnosis, many questions will arise, and some of them will remain unanswered. A lot of parents feel like they’re alone in the world with a child who is “different,” feel guilty or ashamed, experience stigma and feel deserted by their loved ones or emotionally overwhelmed.
Connecting with your emotions
With everyone having their own unique perception of diabetes, each family member will welcome the news of the diagnosis in a different way. Studies show that the parents’ reaction is not necessarily connected with their child’s.
Some parents will feel the need to talk about their emotions, while others will keep to themselves.
The T1D diagnosis is often associated with a feeling of loss—loss of spontaneity, loss of freedom, loss of health—and a wide range of emotions for parents (e.g., anger, confusion, sadness, unfairness, hopelessness).
It’s completely normal
Some parents may reflect a calm and positive attitude for their child’s sake—or because they repeatedly get told that there’s no other choice but to be positive—, but it’s not always possible, or useful. In some cases, burying your emotions can only work for so long before the pressure becomes too intense and emotions overflow. In addition, it might be invalidating for your child to always see a positive attitude when they’re having a hard time, and they might feel like a failure. Validating your child’s feelings (e.g., “Yes, I know it’s hard,” “Yes, it’s a lot to manage at your age”) will help them to feel understood and to know that their situation is taken seriously. From there, you can develop a coping strategy together.
The stages of grief
Following the diagnosis, most parents go through several emotional stages similar to the stages of grief. Rather than grieving the loss of a loved one, they’re grieving life as it was before and the hopes they had for their child’s future.
Grief takes many forms. The stages mentioned here serve mostly as reference points; they don’t describe a linear process that everyone should experience the same way.
Not to mention that life can sometimes force us to go through some of these stages more than once.
- Shock and denial
“It’s impossible. Nobody in the family has diabetes.”
“If I manage to control what my child eats, they will need less insulin.”
This first step follows the diagnosis and is characterized by denial or minimizing the existence of diabetes, its chronic nature and the need for treatment.
- Outrage and rebellion
“This isn’t fair!”
Diabetes and its treatment are seen as being unfair. The parents understand the threat, but also see the negative aspects of diabetes. The parents’ reaction to this unfairness might make them feel resentful, angry, revolted and frustrated, and bring them to put the blame on everything else.
- Negotiation and bargaining
“I’ll take care of everything, so my child won’t have so much on their shoulders.”
The parents seek to have more “control” over their child’s diabetes to reduce the feeling of helplessness.
- Reflection, resignation or depressive feelings
This is the last step before acceptance. The parents understand the chronic nature of T1D and realize that their child’s life will never be the same again (e.g., they will always have to watch every bite of food they eat). This might make them feel sad, exhausted and even depressed.
The parents now have a more realistic understanding of diabetes and its treatment, and decide to take concrete steps to manage it in their daily life. They realize that their child will be able to achieve psychological well-being and have a satisfying social life if they get involved in their treatment and learn more about T1D. There’s no need to “agree” with your child having this condition; you just need to accept to follow T1D management recommendations.
When parents try to accept and deal with the confusion and despair their child feels following their diagnosis, they might try to ignore their own difficult feelings, to appear calm and to pretend that they’re coping with the condition. Wherever they are in this process, parents can reach out to their child’s healthcare team, their loved ones or other people with T1D to ask questions and better understand their feelings and the stages they’re going through. This will help parents cope and find balance in this new reality.
- Kovacs, M et al. “Initial coping responses and psychosocial characteristics of children with insulin-dependent diabetes mellitus.” The Journal of pediatrics vol. 106,5 (1985): 827-34. doi:10.1016/s0022-3476(85)80368-1
- Bowes, Susan et al. “Chronic sorrow in parents of children with type 1 diabetes.” Journal of advanced nursing vol. 65,5 (2009): 992-1000. doi:10.1111/j.1365-2648.2009.04963.x
- Le diabète chez l’enfant et l’adolescent / Louis Geoffroy, Monique Gonthier, Chapitre «L’adaptation au diabète» — Montréal : Éditions du CHU Sainte-Justine, ©2012
Originally written in French
WRITTEN BY: Sarah Haag RN. BSc.
- Amélie Roy-Fleming Dt.P., EAD, M.Sc.
- Aude Bandini, patient-partner, living with T1D since 1991
- Marie-Christine Payette, patient-partner, living with T1D since 1988
- Michel Dostie, patient-partner, living with T1D since 1991
- Eve Poirier, patient-partner, living with T1D (LADA) since 2018
- Claude Laforest, patient-partner, living with T1D since 1984
- Laurence Secours, patient-partner, living with T1D since 1994
- Nathalie Kinnard, mother of a child living with T1D since 2018
- Alec Courchesne, patient-partner, living with T1D