When a child or young adult is diagnosed with type 1 diabetes (T1D), life changes for the entire family in the snap of a finger — including siblings of the newly diagnosed. While this presents a unique opportunity to develop empathy, adaptability, and resilience, siblings often face emotional struggles, too. 

Everyday life with T1D is challenging. From diabetes-related worries and stressors to fears of highs and lows and other health issues, T1D can be overwhelming for caregivers. Often, changes in family dynamics are fueled and shaped by this energy. 

While research suggests it’s normal for a child raised in this family dynamic to experience a variety of feelings — including guilt as a “healthy” sibling of an individual living with a life-long condition — the sibling experience is often overlooked.  

Changes in the home environment can impact a sibling’s quality of life and emotional responses, not just the parents’. This can translate into higher rates of worry, anxiety, and even depression in siblings of those shouldering a T1D diagnosis — especially one that’s managed minute by minute, 24 hours a day, 7 days a week.  

Understandably, each person’s experience will differ, but they have underlying similarities. Let’s take a deeper dive into the sibling experience after a brother or sister receives a new T1D diagnosis. 

 

Why does T1D affect the entire family unit? 

A new, unfamiliar, life-long diagnosis can cause worry about what the future may hold. These uncertainties can trigger fear in parents and sometimes siblings as they take on T1D management responsibilities. 

In a tightly stitched environment, we ideally all look out for each other. It’s just that T1D demands a lot — more on some days and nights than others. 

Moreover, families often face additional financial burdens and time constraints, which can contribute to a sibling’s feeling of being overlooked. As more attention is diverted to the T1D sibling (and all the device beeping), it can result in feelings of neglect, guilt, anxiety, jealousy, and generalized sadness.  

It’s common and expected for family dynamics to change with a new diagnosis. But, when lifestyle changes are enlisted for the entire family unit, siblings may struggle secondarily with feelings of control.

 

Common sibling experiences 

We asked our T1D Exchange Online Community: “If you were diagnosed with T1D as a child or adolescent, in what ways do you believe T1D may have affected your siblings or family dynamics?” 

 

The following challenges were held in common: 

  • With extra T1D attention, feelings of resentment are more prone to arise in siblings 
  • Given more responsibility at a younger age, both kids with T1D and their siblings are expected to grow up quickly 
  • Expectations are for everyone to be on high alert and support T1D needs 
  • Changes to dynamics often result in healthy siblings harboring feelings of guilt 

 

As a sister of a sibling who was diagnosed at 5 years old with T1D, I can say that a T1D diagnosis is difficult and has generated feelings of resentment and guilt in my own life. My parents weren’t always able to give me attention when I felt I needed it, but they were honest with me and equipped me with healthy coping strategies that I still use to this day to manage my emotions. 

I was 6 years old when my sister was diagnosed, and now, looking back on childhood experiences as an adult, I can better understand the decisions my parents made, and I approach seemingly negative memories with grace for the family unit as a whole.  

 

What are the lingering effects of chronic disease on a family? 

A T1D diagnosis can essentially change the dynamics of a family, like it or not. While some participants in our Online Community stated that it was for the better, for others, it made things worse.  

Research suggests that when a family member is living with a chronic condition, it can reduce communication within the family unit, suppress the needs of healthy siblings, and force family members to cope with an unfamiliar set of circumstances.  

As a parent or sibling of a child with T1D, you have the power to decide the best way to support your family — it’s OK to ask for help and utilize available resources. Ultimately, the end goal is for everyone to thrive and develop resiliency, cohesiveness, and empathy.  

In contrast to the potentially negative effects associated with a T1D diagnosis (mentioned above), an inspiring theme surfaced, too: overall improvements in the family unit’s health. Several contributors explained that their family’s dietary choices changed after their T1D diagnosis, which led to healthier lifestyles for everyone. 

 

Coping with chronic disease 

Certain feelings can be overwhelming and may need support. While every individual is different, you can find the support your family needs and deserves. Sometimes, the hardest part is reaching out. Here are a few ideas to get started.  

 

Needing outside support is normal and expected 

Establishing a trusted connection with your diabetes care team can help a child feel supported in managing their diabetes. While this professional team is important in helping achieve diabetes-related goals, your child will also benefit from consistent and strong support at home. Focusing on family-centered diabetes care can help make the diagnosis feel less overwhelming.  

 

Speak openly and honestly about a new T1D diagnosis  

As a parent or sibling, let your newly diagnosed family member know you are there to support them and help with whatever they may need. Life with T1D can place strain on the family unit, so being honest about the diagnosis can help everyone adapt to the “new normal.”  

 

Make time for 1:1 interactions with your other kids  

Again, a new T1D diagnosis in the family requires lots of time and attention — and can leave other siblings feeling left out. Offering emotional support and resources can go a long way in making sure other children feel seen and heard.  

 

Educate immediate family members, friends, and teachers  

Diabetes-related emergencies happen, and offering education to those who spend more time with the child can help everyone feel prepared. Knowing what to do in an emergency is empowering and can help everyone to feel more comfortable.