Feelings of Guilt among Parents of Children Living with Diabetes: Unshackling the Chains

November 16, 2022
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Type 1 diabetes is a life-changing diagnosis for both children and their parents. Many parents experience feelings of guilt around the time of diagnosis as well as thereafter. Although this feeling is common, understanding guilt and how it influences parenting can allow you to decide if and how you might want guilt to play a role in your life.

Guilt versus Other Emotions

Many parents experience a lot of challenging emotions related to their children’s diabetes like grief, frustration, anger, and sadness. When any negative parent emotions linger and fester over time, they don’t only cause discomfort for the parent, they can also lead to poorer diabetes outcomes for your child.1–3  But guilt is especially complicated because it implies that someone (a parent) did something wrong or is to blame. In the shock of a new diagnosis, many parents search for any rhyme or reason for this diagnosis, and some fear that genetic factors are signs that parents “gave” their children diabetes. But let’s be clear: there is no bad guy here. No one did anything to intentionally cause type 1 diabetes. And acting as if you caused your child to have type 1 diabetes is not just factually incorrect, but can also be problematic for you and your child.

Guilt and Parenting

There are two common ways that parents respond to feelings of guilt: overindulging their child and/or being overly permissive (not setting appropriate limits). Examples of overindulgence include buying a child an extravagant gift after each diabetes appointment, or unlimited access to video games or unhealthy foods. Examples of being overly permissive would be letting a child stay home from school whenever they’d like (not for medical or other reasons) or allowing a child to act aggressively or disrespectfully. Some parents hope that these guilt-driven behaviors serve as unspoken “consolation gifts” for diabetes.

But the truth is that none of these things will make having diabetes “fair” and rarely make diabetes tasks easier. In fact, these “gifts” often have the opposite effect. Giving your child prizes for having diabetes is a confusing message and can make some children feel “different” and “sick” in ways that are not adaptive. They also send the message that the child is owed indulgences or excused from any life demands because they have diabetes.  For these reasons, overindulgence and being too permissive can lead to problems with diabetes, general health, mood, and behavior, even if they might make you and your child feel better in the moment.

What Can I do Instead?

Process guilt in healthy ways. It is ok to feel guilt as long as you are careful of what you do with that guilt. Have conversations with people who understand and can be supportive (not with people who do not understand where diabetes comes from; that can make things worse). Get involved in local and nation-wide diabetes organizations (like CWD) and parent forums. You are not alone. You can also talk with spiritual/religious leaders. And if you can begin to accept diabetes as a challenge rather than a curse, your child will have a better outlook too.

Reward children for things they can control and that make diabetes management go more smoothly. Instead of rewarding your child sitting through a medical appointment, reward them for being cooperative and patient during the appointment. And instead of giving a reward for every pump change, consider rewarding them for helping you gather the pump supplies and/or sitting calmly during the change. Reward a child’s behaviors that help diabetes management go better for both of you both empowers children and adds positivity to diabetes tasks.

Use rewards that are reasonable and healthy. Rewards should be free/inexpensive, of interest to your child, and help your child feel independent. Privileges (getting to stay up a little later, getting to be first to do a fun activity, choosing activities or evening schedules) and breaks from chores can go a long way. Increased access to screen time or appealing games/activities are good too, in moderation. Avoid foods, expensive rewards, or rewards that are hard to give out frequently.

Focus on balancing setting limits with warmth and support. All children (with and without diabetes) benefit from parenting that includes two primary components: effective limit setting AND warmth/affection.4,5 Instead of using indulgences or being permissive, use quality time together, words of affirmation, and praise to express to your child how you feel and to help lift his/her/their mood.

Practice self-kindness. Please remember that you are a parent of a child with diabetes, among many other things in life, but you are also a human being. Shackling yourself to guilt through self-blame only hinders your effectiveness as a parent. Taking care of yourself and working to free yourself of guilt will help you feel better, be a better parent, and allow you to serve as a strong role model for your child.

Give yourself a chance to think through situations that trigger feelings of guilt. An example of this type of situation would be if your child asks you why he/she/they have diabetes, or if an uninformed person asks you if your child has diabetes because you fed your child too much sugar. If these situations have come up, think about what you can do in the future to be sure that you are taking care of yourself and not allowing others to unduly influence your emotions.

Help If You Need It

If you are struggling with guilt and other emotions and are open to professional support, here are some resources:

  1. For a list of in-network mental health providers, call the number on your health plan/insurance card.
  2. For a list of mental health providers trained in diabetes: https://professional.diabetes.org/mhp_listing
  3. For mental health providers across various regions and specialties: psychologytoday.com

As a parent, you are in a prime position to support your child and help them live a healthy and happy life with diabetes. But to be an effective parent, you must be healthy and happy too. Breaking free from being shackled to feelings of guilt will help you and your child become freer, stronger, and better equipped to face life and diabetes challenges together.

References

  1. Rumburg TM, Lord JH, Savin KL, Jaser SS. Maternal diabetes distress is linked to maternal depressive symptoms and adolescents’ glycemic control. Pediatr Diabetes. 2017;18(1):67-70. doi:10.1111/pedi.12350
  2. Almeida Carolm. Grief Among Parents of Children With Diabetes. Diabetes Educ. 1995;21(6):530-532. doi:10.1177/014572179502100606
  3. Martin MT, Miller-Johnson S, Kitzmann KM, Emery RE. Parent–child relationships and insulin-dependent diabetes mellitus: Observational ratings of clinically relevant dimensions. J Fam Psychol. 1998;12:102-111. doi:10.1037/0893-3200.12.1.102
  4. Anderson BJ. Parenting styles and parenting practices in pediatric diabetes. Diabetes Care. 2011;34(8):1885-1886. doi:10.2337/dc11-1028
  5. Shorer M, David R, Schoenberg-Taz M, Levavi-Lavi I, Phillip M, Meyerovitch J. Role of parenting style in achieving metabolic control in adolescents with type 1 diabetes. Diabetes Care. 2011;34(8):1735-1737. doi:10.2337/dc10-1602

Written by Jessie Wong, PhD