Our experts provide helpful tips for patients and caregivers to use after a diabetes diagnosis.
A diabetes diagnosis from your doctor can be daunting and overwhelming. No matter the patient’s age or the type of diabetes, the reality of a chronic disease that you and your loved ones will now have to supervise daily can be shocking.
The majority of those diagnosed with diabetes are forced to learn a large amount of information quickly. People with diabetes must start learning self-management and survival skills all at once. But, upon initial diagnosis, processing and coping with the diagnosis is crucial before moving forward with self-care.
It’s also important that patients and caregivers advocate for the right information. Hopefully a doctor will provide the necessary tools for self-education and learning to regulate a healthier life. If extra support is needed, registered nurses, dietitians or diabetes educators are available to support, guide and teach. A recent study by the American Association of Diabetes Educators shows less than seven percent of people diagnosed with diabetes get referred to diabetes educators, but they are a resource that can offer important support systems for individuals and families.
Altering daily life
Take every day one step at a time when adjusting to a diabetes diagnosis. Start by focusing on what can realistically be done. Upon a recent diagnosis people may not be ready to accept the fact that they have diabetes, so small steps are important. Many struggle with the emotional impact, and this must be addressed before the behavioral aspects can be implemented. Remember, no one has to do 12 new things all at once. Work on one behavior modification until it becomes a habit, then add in another. If you are handed a list of behavior modifications, take time to evaluate which items are realistic for you to handle now. Don’t let yourself be overwhelmed. Ask:
- How ready am I to take my medications?
- How ready am I to check my blood sugar?
- Can I change my eating habits?
It’s equally important for caregivers to be supportive. Listen to the person with diabetes and repeat their thoughts and needs to let them know they are heard. Ask how to help. Point them in the direction of resources. Emotional reactions are completely normal — anger, depression, nervousness.
Type 1 patients
Pediatric diabetes and Type 1 patients are unique cases. These patients do not have internal insulin production so things are a bit more high risk. Initial diagnosis can feel a bit more like a survival skills crash course. Another complexity of pediatric diabetes is parents who might not be familiar with the disease now have to help manage it. This can also get more complicated if it involves split-family homes, whether the parents are on good terms or not. Additionally, a child’s diabetes management will need to be coordinated with their school nurse or care provider.
Children might not always be able to vocalize their highs and lows, so parents take on extraordinary responsibility when their child is diagnosed with Type 1. For this reason, it’s crucial that parents connect with other parents to discuss daily life management. For example, there are private Facebook groups that allow parents to ask questions about daily tasks, like easily counting carbohydrates in cereal.
It can throw a wrench in your family dynamic when you have a child diagnosed with a chronic disease. Parents should treat diabetes as any other responsibility in your child’s life. Don’t give
them full responsibility at age 9. Add the appropriate amount of responsibilities as they mature, and make sure your child is adhering to those responsibilities. Use incentives and consequences like you would with homework.
Parents must be clear with children, “If I could take this from you I would, but life isn’t fair. It’s a responsibility.”
Parenting skills really come into play in these situations, but make sure not to focus exclusively on the diabetes. It’s very easy to get in the habit of having a conversation of, “Good morning, what’s your blood sugar?” Parents must remember not to let the disease override normal interactions. Siblings can also struggle, so many resources exist for them as well. There are special events and camps for siblings of kids with chronic diseases that can allow for much needed outlets.
Overall, family members and caregivers need to be the supporters and not the police. Whether you are newly diagnosed with diabetes or a loved one is newly diagnosed, approach the disease realistically. Living with diabetes is an adjustment that will take time to properly manage, but do not be afraid to reach out for help.
Rachel Head is a registered dietitian and certified diabetes educator specializing in pediatric diabetes, diabetes technology and the role of social media in disease management. Head serves as the diabetes program manager at Phoenix Children’s Hospital, where she advocates for practical and patient-centered education.
Joanne Rinker serves as the Senior Director for Community Health Improvement at Population Health Improvement Partners, where she works to increase community coalitions and build strategies to reach the Health North Carolina 2020 goals. She was named the 2013 AADE Diabetes Educator of the Year and currently serves on the AADE board of directors.