Stephanie’s husband, Dan, has had type 1 diabetes for decades, so she’s familiar with the disease and its management and takes the lifestyle in stride. Still, when her son Jonathan, 14, was diagnosed three years ago, she says she went into a tailspin.
“I had gone through diabetes with my husband for years, but it’s different with your son. I went through a depression, I guess you could call it, for about six months. I cried all the time. I could be in an aerobics class and break down. It was like a truck hit me,” says Stephanie, of New Jersey. “As parents we try to protect our children, and there’s nothing we could do about this.”
A Traumatic Diagnosis
Parents of children with type 1 can be at risk for a blow to their own mental health. Immediately post-diagnosis, particularly in younger children, some 60 percent of parents will experience significant stress, depression or anxiety, says Randi Streisand, Ph.D., diabetes team director of psychology research and services at Children’s National Medical Center in Washington, D.C.
“Often parents don’t have any clue that their child has diabetes. They think they have the flu, maybe, and suddenly they are told that it’s not the flu, it’s diabetes. It’s a huge, life-changing event,” says Cynthia Van Teyens, a pediatric diabetes nurse educator at Kaiser Permanente in Oakland, Calif. Often, Streisand adds, “there’s a feeling of inadequacy, that you’re never going to be able to take care of your child properly.”
“I remember asking the nurse how to cure my son’s diabetes,” says Leslie, also of New Jersey. “She looked at me and said, ‘Honey, there is no cure.’ I replied, ‘But we have insurance, we have money, what do you mean there’s no cure?’ She then explained to me that he would be on insulin his whole life. That is when I felt something. That is when I felt someone had just simultaneously ripped out my heart and punched me in the gut. My son needs shots just to live. Now, my mindset has changed, because I really do not sweat the small stuff. I did all the right things for my son in the first four years of his life, and he still got type 1 diabetes. It was a great lesson for me as a mom — that there are going to be things thrown at you that you cannot prevent, and you can either step up and deal or drown. We have decided to step up to diabetes.”
Some parents under the stress of a new diagnosis may respond by withdrawing from social activities and changing their lifestyles, Streisand says, which just compounds the problem. The more isolated they feel, the less inclined they are to resume their lives. Plus, worried parents may also keep children home to try to protect them from adverse events, which can impact the child’s growth and confidence. Stress can also impact how well parents learn about and manage a child’s diabetes care.
“The more anxious and depressed you are, the lower your confidence in carrying out diabetes management. That could lead to avoiding necessary tasks, because you don’t think you’re doing them correctly,” she says.
Someone Who’s Been There
If you’re feeling overwhelmed, talking to other parents of children with type 1 can be a big help, Streisand says. Consult your diabetes team, or check out the Juvenile Diabetes Research Foundation and American Diabetes Association websites to find a support group near you.
“I think that you only understand what it’s like when you have gone through it — the sleepless nights, the grief. Realize that this is normal. You have your feelings, get ’em out and discuss them with someone you trust,” Van Teyens says.
Ask for more help from your diabetes team, too, if you have management questions, even if you’re months post-diagnosis. “We don’t expect you to absorb everything in that first meeting, because you’re so blindsided. Sometimes parents need to come back later to get more information,” Streisand says.
Also know that things usually get better with time, she adds. “There seems to be an adjustment period during those first few months when everything is new, and parents describe that they have to learn how to manage diabetes from every aspect of their family’s life: the first birthday party, the first sleepover, etc. Once they experience each of these events, they get more confidence under their belt,” Streisand says. “In the first few weeks, type 1 diabetes involves so much learning and managing and reacting to situations that you don’t realize what has just happened — namely, that your family life has been drastically altered. In a way, you’re too busy to notice. But kids can read their parents’ faces.”
“When my wife and I are smiling or laughing, our daughter is just like any other child,” says Fiaz, of California. “It definitely helps to stay positive amid all the stress-causing events. I strongly believe that a cure is right around the corner. I don’t think it’s delusional to think that, in spite of all the potential cures that seem to fail. I don’t know the future, but neither do the pessimists.”
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.