I want others to know me because of who I am, not because of what I have.
Caitlin, 13
The Diabetes Experience Journal is a collection of stories and personal experiences from patients and families about what it has been like to live and cope with pediatric diabetes. It represents the “collective wisdom” of these families as well as their health care providers.
While it is normal to feel some emotional discomfort associated with reading the stories of children and parents describing their experiences with diabetes, we hope that families may learn from the stories of others facing similar experiences.
Visit the Glossary to read definitions for words in bold. Visit our Resources page to learn more about parent and clinician recommended websites on pediatric diabetes.
Video Interviews:
- Interview with Amy
- Interview with Amy’s Parents
- Interview with Maureen Powers, RN, a nurse formerly with the Diabetes Program at Boston Children’s Hospital.
Child & Adolescent Stories:
In some ways, I think having diabetes has given me better perspective about some things. I know for sure that having this condition has shown me things about myself and what I am capable of dealing with that I had no idea existed.
Sarah, 23
- Understanding my Diabetes
- My treatments and medications
- How it affects my family
- How it affects me with friends and at school
- Challenges and rewards
- Words of wisdom from kids
Caregiver Stories:
Diabetes is a way of life for us. Don’t try to withhold any information from them or pretend that the diabetes is not there. I think knowledge is power. That should be true for a child with diabetes as much as it is for anyone else.
A Father
- The first signs
- Getting the diagnosis
- Treatments and medications
- How it affects our family
- How it affects our child’s social life
- Working with the medical team
- How we cope
- How we help our child cope
- Challenges and rewards
- Advice for other families
- Words of wisdom
Clinician Insights:
I think the very, very simple message is: You can do it. While it’s devastating and difficult to learn and there are a lot of emotions to deal with from parents feeling guilty and kids feeling angry, diabetes is something that we know an awful lot about in terms of treatment and management. Knowledge is power, and the more you know, the better it will be.
Jennifer Rein, LICSW
- Our experts
- Defining and diagnosing Diabetes
- Common questions and concerns
- Medications and treatments
- How we work with patients and schools
- How we work with families
- Challenges and rewards
A group of parents and health care providers has reviewed all of these contributions for appropriateness. The Diabetes Experience Journal was created by the Boston Children’s Hospital Diabetes Program and the Department of Psychiatry.
Editor’s note: Please keep in mind that every patient is different, and discussions of alternative treatments, complications, and timelines may not apply to you. Additionally, some families identify medications and treatments that work well for them. The Experience Journals do not endorse specific methods. Each individual is different, and we invite you to discuss treatments with your doctors and nurses to see if they are right for you.