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In the years since my own child was diagnosed with diabetes, I have heard from many other T1D parents about their experiences.  A friend once told me that shortly after receiving the bad news, he broke down while talking with the E.R. doctor.  He recalled feeling like his child had just been given a “death sentence.” A profound sense of sorrow and helplessness overwhelmed him.  Looking back, he recognized those thoughts and feelings as grief – like when losing a loved one.  But nobody had died, so what was his sense of grief all about?  For him, it was his child’s loss of innocence and a secure existence.  His hopes of providing a safe, healthy, and carefree childhood had suddenly and unexpectedly vanished.

Intense feelings of sadness, guilt, and anger, if not addressed, can lead some parents to become depressed, which causes serious problems in day-to-day functioning and complicates diabetes management. Studies show that diabetic children of parents who are significantly and persistently distressed are more likely to experience adjustment problems and poorer blood sugar control.  This vulnerability increases as the child approaches adolescence and the transition to adulthood.  Seeking professional counseling services can help struggling parents alleviate these difficulties.  In fact, experts recommend that even newly-diagnosed families receive supportive and educational counseling during the first year to help them adjust to their new challenges and to monitor for any emerging areas of greater concern [1].

Although the initial shock and feelings of loss typically diminish with time (after we make it through the first year), that sense of grief remains in the background for many of us.  We may feel it again when we see the emotional overwhelm of an awful “low” or the fitful irritability of an unrelenting “high.”  We may feel it when we hear them say (or we think to ourselves), “I hate diabetes.”  We may feel it at times when diabetes outwits us in our quest for just one day of stable numbers in the target range.  We may feel it when diabetes puts up apparent roadblocks for our children at school, in sports, or with friends. We can feel it acutely on their “diaversary.”  Our grief can resurface in so many different ways (as followers of the PEP Squad Facebook page can attest!).

This ebb and flow of painful thoughts and feelings about diabetes is quite normal, even many years after diagnosis.  To cope with these expected reactions, however, it is important to recognize them, allow yourself to feel the associated feelings, and seek support and encouragement from trusted family members, friends, and other T1D parents.  We cannot remove diabetes, as a stressor, so we are left with the choice of how we want to view our experience of it.  The sense of profound loss can be evened out by gratitude for the amazing treatments that keep our children alive and on the path to wellness.  We can transform helplessness into empowerment by focusing on how well we can help our children live, in spite of the challenges.  Hopelessness can be exchanged for a realistic optimism that our children will reap amazing health benefits from rapidly advancing technology and science.  Sadness can be diminished by the joy of seeing our children live otherwise normal (and at times, extraordinary) lives.  Understanding and coping with our grief as parents can bring us closer to a balanced, accepting place, which benefits both us and our families.

Provided by PEP Squad’s Dr. Gary Levenston, a clinical psychologist living in South Florida whose family has been impacted by type 1 diabetes.

 1 Report of The Mental Health Issues of Diabetes conference, October 2013, Philadelphia, PA.

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