Coming to grips with the emotional challenges of a new diabetes diagnosis can be an overwhelming experience for families. At a time when patients and parents are at their most vulnerable, they must quickly overcome the initial shock of the diagnosis, learn complex information, make considerable lifestyle changes, and help develop new attitudes and behaviors. Diabetes experts Katie Marschilok, R.N., Joseph Solowiejczyk, R.N., M.S.W., C.D.E., and Barbara Anderson, Ph.D., help you navigate the emotional shoals families face with a new diagnosis and talk about how to get to the “coping stage.”
Coming to grips with the emotional challenges of a new diabetes diagnosis can be an overwhelming experience. At a time when you are at your most vulnerable, you must learn complex information about glucose levels, blood testing meters, and insulin, and make considerable changes in your lifestyle. If it’s your son or daughter who receives the diagnosis, you must help your child develop new attitudes and behaviors toward a chronic illness at the same time you’re coping with the news. In fact, how you deal with the diagnosis–and the emotional support you receive during this stressful period of adaptation–can have a profound impact on your child’s adjustment to the disease.
Katie Marschilok was no stranger to diabetes. A registered nurse who worked at St. Mary’s Hospital in Troy, New York, she was experienced in caring for people with diabetes. But when her child, David, was diagnosed at age 8, Ms. Marschilok was overpowered by intense emotions: shock followed by tremendous sadness. “My child’s perfect health was gone forever,” she says. People told her she was lucky to be working in the diabetes field, but she didn’t feel lucky at the time. Such reassurances seemed lacking in empathy. She needed someone to acknowledge that the diagnosis was very difficult. Fortunately, Ms. Marschilok found support from Eileen, a diabetes educator, that enabled her family to rebuild their lives. In time, Ms. Marschilok earned a certificate as a diabetes educator. When her 21-year-old daughter Amy developed diabetes eight years after David’s diagnosis, more acquaintances labeled Amy lucky to have a diabetes expert in the family, yet the sadness was the same.
Unlike Ms. Marschilok, who experienced and dealt with the gamut of emotions after a diagnosis, patients and parents who don’t confront their feelings tend to feel overwhelmed without knowing why. “Some people get into denial that the disease won’t change their lives,” she says. Ms. Marschilok wants parents to know these feelings are normal. “People need to go through several stages from shock to acceptance in order to get to the coping stage,” she says. “Diabetes is a terrific challenge in life, but you can make a remarkable difference by becoming a student of your emotional progress. That will help you work with this new reality and make it your own.”
In doing so, parents should try not to display their fears and anxieties to their children, as adults’ reactions will influence how their children perceive diabetes and themselves. “Parents really need to get over the hard part on their own, either with friends or a support group,” she says. “It takes coaching to get parents to respond in a way that is not judgmental and does not come out of hurt.”
Finding a Sensitive Health Care Team
In the days following a diagnosis, parents may have great difficulty in telling their child what is happening to them or what the new diagnosis means for their future and that of the entire family. “We used to lie to families at diagnosis and tell them that nothing in their lives has changed and that they can live life as they used to,” says Barbara Anderson, Ph.D., Professor of Pediatrics at Baylor College of Medicine, in Houston, Texas. “That’s not true.” A key to successfully navigating the transition is a sensitive health care team that is interested in your child as a developing person, not a blood sugar number, and that acknowledges how you feel about the diagnosis and can help you stay on course. “So much of what you learn about diabetes is from a health care team,” she says. “If you have a health care team that doesn’t like to see mothers crying, you try to stifle your emotions. If you have a nurse who doesn’t understand that children are frightened, your child has a more stressful time in medical visits.”
The first year after diagnosis is a series of firsts: the first time you forget insulin or the first time your child has a hypoglycemic reaction in school. Parents eventually learn to navigate the emotional hazards of these new experiences (for an illustration, see “Ask a Parent,” below). But without a guide through this leg of the journey, you risk doing additional emotional damage to yourself and your children later, says Dr. Anderson. She remembers a young mother who believed she was responsible for causing her son’s diabetes because she had given him milk when he was 3 months old. Without a chance to air her concerns, the young woman was so riddled with guilt that she could not set limits and had forfeited her authority as a parent. She was raising a “brat with diabetes,” says Dr. Anderson.
More Support to Help You Cope
In addition to learning technical know-how, families need help in managing their emotions associated with diabetes. “So many patients and parents come in and say, ‘I’m the worst diabetic’ or ‘I am the worst parent.’ That is a function of not knowing where to look for support,” says Dr. Anderson. “And I reply, ‘What do you do well?’ Then I help them find their little successes to build on.” Sometimes, though, health care professionals avoid dealing with emotional issues because they are afraid of opening something they can’t deal with, according to Joseph Solowiejczyk, R.N., M.S.W., C.D.E., Clinical Manager of Counseling & Presentations with the Animas Corporation. If you find yourself in this situation, there are many other avenues of support. JDRF can play a crucial role in helping. “Getting people to the support they need and drawing them into a network of other families with the same struggles are some of the most important things that JDRF does,” says Dr. Anderson.
Your role as a parent is to make your children feel safe and secure as their lives unfold, says Mr. Solowiejczyk. The degree to which you succeed will have a tremendous effect on your child’s emotional adjustment to living with diabetes. Mr. Solowiejczyk emphasizes this point with a study by the Children’s Hospital in Philadelphia. The study showed that the most important factor in a child’s metabolic control in the first year after diagnosis was the family’s ability to communicate and set ground rules for the child about diabetes management. In two-parent families, a powerful predictor of the child’s blood sugar control was how respected and supported the mother felt by other family members. Similarly, in single parent families the support network that the parent had developed was the determining factor.
It is true that your regular health care provider, friends, and family can help you with emotional issues, but if you’re finding it harder to cope, it’s best to seek help from specialists, says Mr. Solowiejczyk. A mental health professional can help your family adjust to the diagnosis and reorganize itself as close as possible to the way life was like prior to the diagnosis. “Most people think you just have to pull yourself up by the bootstraps and move on. I think it actually takes more courage to cry and break down than not to fall apart,” he says. “The health care professional can make it feel safe for you to collapse and be reborn again.”