Years ago, after friends and acquaintances in my little community learned about my son’s type 1 diabetes diagnosis, just about everyone’s knee-jerk comment was, “you need to talk to” one particular woman—who, in this article, we’ll call “Cathy,” due to the lack of anonymity in said “little community.” Cathy’s child had been diagnosed with type 1 diabetes more than a decade earlier, when he was an infant. Her son’s diagnosis was a terrifying ordeal of a sickness repeatedly misdiagnosed; when he was finally airlifted to an urban hospital that specialized in pediatric endocrinology—and saved his life—his blood sugar was in the 1,000s.
It took me a while to contact Cathy. My husband and I first had to find our bearings and figure out how to take care of our little boy on our own terms. We had another toddler, stressful jobs and were far from family who could step in to offer relief or support. When I finally reached out, Cathy and I hit it off immediately—people dealing with a chronic disease like type 1 diabetes seem to belong to their own tribe, what I call an “I Get It” club. Cathy and I understood each other’s worlds. She educated me on dealing with schools, on traveling with diabetes, on expecting my kid to eat us out of house and home after lows. Cathy could carb count with the speed and finesse of a gymnast; she made managing her full, bustling household look easy; she let her kid with diabetes play outside—alone. She sent him to diabetes camp. And it was her son who helped show my little guy that he could do his own finger sticks, that an insulin pump would mean all sorts of freedom. We gathered for play dates and family meals and sometimes the two of us escaped for cocktails.
So about a year ago, when Cathy confided that she was leaving her husband, I was floored. She’d had enough, she said.
Now, I want to preface what follows by saying that type 1 diabetes did not ruin Cathy’s marriage. In Cathy’s case, the relationship ended because of what she describes as “systemic dysfunction.” She says, “I was a full-time mom and [my husband] figured his 40-hour work week job was his job. I just did everything. We didn’t talk about it. That’s where the resentment built up.”
Sure, diabetes was demanding, sometimes overwhelming. Cathy took on all of her son’s nighttime checks, medical appointments, pump set changes and ordering of medical supplies, but “it wasn’t just diabetes,” she says. She was responsible for managing the household as well as everything involving her other kids’ needs.
“[My husband] was complacent and comfortable. I would have had to be in the hospital for him to step up to the plate and even then he wouldn’t have known what to do. He was never a solution-maker, never contributed in the conversation about how we could manage everything and make it doable for both of us.”
She says, “I wouldn’t wish a chronic illness on any family.” The stress that comes with it while dealing with everything else “can bring out characteristics in a partner that were already there, but more magnified.”
Cathy and I have discussed this at length. She says that if there’s a thread of her experience that can help people, if hers can serve as a cautionary tale, she’ll feel she’s contributed something. And so, to honor her wishes and to support all of us who are juggling life and then some, the following is advice from Dr. Rebecca Ruid, a psychologist at the University of Vermont Medical Center who has worked with hundreds of families dealing with type 1 diabetes.
When First Diagnosed
Learning that your child has type 1 diabetes is a life-changing event. I encourage families to accept this and allow for a period of grief, which includes anger, sadness … you name it. I encourage parents to observe their emotional responses during this time without judging them or trying to change them. Validating our own emotional experiences, as well as those of others, is important in this initial stage. Everyone won’t respond in the same way, or at the same time. There is no right response.
How to Cope
I encourage families coping and adjusting to a new diagnosis to seek support from the multi-disciplinary staff in their clinic, which most often includes a social worker, psychologist and nutritionist in addition to the familiar nurse educators and medical team. We have been through this with many families and can offer a neutral party perspective. I also encourage families to seek the support of other families who have a child with type I diabetes. Connecting in person with other parents/caregivers who can understand and empathize can be helpful. And accessing online forums can also provide support from others who can best understand your experience.
A Specific Support List
I encourage parents to develop a concrete list of how friends, family and others can help you. Those who care about your family and child want to help but don’t know how. This leads to limited support that is offered, or support that is more of a burden or stress than it is helpful, despite the well-meaning intentions. The list may include asking those you often dine with to calculate carbs in the initial weeks to months of the new diagnosis. Or requesting that the school nurse contact you via email each day with BG readings for your log.
Your Role in Caring for Your Child
There isn’t a one-size-fits-all approach to determining roles within a family when it comes to general tasks and responsibilities, such as grocery shopping, paying bills and mowing the lawn. It’s no different for diabetes. The key is clear and healthy communication about roles and determining who is responsible for what and when—and communicating exceptions to this. If one parent feels overly burdened by a responsibility, this should be discussed and changes should be made. More often than not, problems within a marriage (poor/ineffective communication, unhappiness with roles, challenges with problem solving) were present before diabetes arrived in the family. Diabetes can bring these to the forefront, or shine a spotlight on them, but diabetes is certainly not to blame for the dissolution of a marriage. It can be detrimental to blame diabetes for marital problems—it can lead to resentment and anger about diabetes, it can lead to guilt on the part of the child with diabetes. It can inhibit learning from challenges and moving forward with more healthy relationships because it places the blame on something external to the two individuals involved.
I encourage caregivers to have date nights. Most of us had relationships with our partner before children and we will hopefully have one after our kid(s) successfully launch. To do this, we need to maintain that relationship during the more active child-rearing years as well. Whether it’s a weekly or monthly date, schedule time for you, as a couple, to connect. When you and your partner are connected, communication—both about diabetes and unrelated matters—is better. And feeling connected to your partner feels good!
I encourage caregivers to have their own hobbies, interests and activities. This may involve fitness, a book club, spa trip, grabbing a drink with friends. Though these interests can include the other caregiver—and even the child(ren), at times—this should be “me time.” Yes, these activities take time away from family time, but they are important for maintaining mental wellbeing. Not only does this self-care provide time to recharge, but it models healthy balance for our children. Parents are individuals too, with our own interests, coping tools and needs. It’s okay to identify and access them. We are only able to parent well when we are well.