Six years ago my son, Jack, was diagnosed with type 1 diabetes at age 11. The three days my husband and I spent in the hospital, sitting like sentries by Jack’s bed, were mentally and physically exhausting. In between round-the-clock finger sticks, insulin injections, and ketone checks, there were mandatory daily classes on diabetes for us to attend, the reality of the diagnosis setting in more with each lesson.
When we finally left the hospital, I felt a mixture of relief and fear at the prospect of managing diabetes all on our own. As an experienced marathon runner, I resolved to treat the challenge ahead like that formidable race: I would just have to dig deep and keep going no matter what discomfort I would feel. Caring for my son and learning about the complex condition of type 1 diabetes was all that mattered.
A marathon is only meant to last a few hours, however. Five years into Jack’s diagnosis, I started graduate school for a degree in school and mental health counseling. In the first week, my professors taught us about the importance of self-care and how it’s part of the ethical code for counselors. Without taking care of ourselves, how can we properly help others? Looking back now at the years after Jack’s diagnosis, I can reflect through the lens of a fledgling counselor on why my no-pain-no-gain mind-set wasn’t best for either of us — and what real self-care actually looks like when your child has a chronic illness.
Self-Care Is: Accepting Help
In those first few days post-diagnosis, if anyone would have mentioned the concept of self-care, I would have looked at them dumbfoundedly. I was at the beginning of my self-imposed marathon, and I needed to focus on my goal of caring for Jack. My noble goal sounded great until I started to live it 24/7, along with frequently interrupted and poor-quality sleep. I made a critical error, just like many new mothers: I thought I was the best person to care for Jack and master his condition — even though I’m married to a very capable man… who happens to be a doctor. I was spreading myself too thin and exhausting myself in both mind and body. Something had to give. So we made a family decision to have Jack attend a summer sleepaway camp for kids with type 1. Those six days without Jack were an adjustment for us all, but I trusted in the expert care at the camp, and I finally slept a full night for the first time in 10 months. As time went by I identified two great babysitters who had T1D themselves, and it felt fantastic to be able to go out with my husband without worrying.
Thinking that you’re the best and only person to care for your child isn’t necessarily great for your child either. It can send an implicit message that they aren’t capable of ultimately taking care of themselves. As a wise D-mom once told me, “He’ll be caring for himself much longer than you’ll be around.” That may sound morbid, but it’s a reminder that we need to impart to our children the knowledge, tools, and can-do attitude they’ll need when they strike out on their own. We can give them these gifts when we learn to gently let go over time and trust in their abilities.
Self-Care Is: Taking Time to Organize
A common source of grief for newly diagnosed families is the loss of spontaneity. People with T1D don’t just get up and go at the drop of a hat; they need to have their supplies with them at all times. So much literal baggage comes with diabetes, in the form of juice boxes, insulin, alcohol swabs, lancets, syringes, ketone strips, batteries, adhesive, and more. This baggage can weigh us down not just physically but mentally, creating a feeling of vulnerability that can end up tethering families to the home front. Being sad and scared about this major change is completely understandable; part of self-care is allowing yourself to grieve that change.
Another part is indulging your inner organizer. The worst feeling can set in when you’re running low on essential supplies — or you’re not even sure because your inventory is in disarray. Invest the time to acquire and organize your diabetes supplies so that there’s a place for everything and everything is in its place, and you may find that your spontaneity reemerges. Make a “go bag” so you can mobilize quickly for an impromptu bike ride with the neighborhood kids or a last-minute family trip. Since my son was diagnosed, it’s a personal point of pride that I have never been more organized in my life.
Self-Care Is: Using Your Vacation Days
For our family, travel became an elixir. Everything about it implies an inherent optimism about the future, and this was just what we needed to feel free again. T1D was not going to rule us. We could rule it. We could leave the safety and familiarity of the diabetes storehouse at home, as well as the convenient routines for meal preparation and carb counting. We could take our supplies and our skill set on the road. If travel is what refreshed and restored you before diagnosis, then get back out there. Go anywhere, whether it be the next town, the next state, or out of the country. Your planning will be worth your effort, and you’ll be satisfied in knowing that diabetes is indeed a very portable condition. Plus, if you fly, the practice that your child will get in advocating for him- or herself through airport security will be invaluable. Critical skills like planning, organizing, and communicating effectively with others will only be enhanced by the challenges and opportunities that travel provides.
Self-Care Is: Trusting Your Instincts
Not every adventure is right for every family. Soon after diagnosis, the issue of sleepovers arose for us. Some of my most harrowing memories of T1D parenting occurred on these nights while watching lows get lower on my son’s CGM (continuous glucose monitor) when he was away overnight at a friend’s house. Don’t feel pressured to conquer any milestones until you and your child are ready. You will get there in your own time. Perhaps the best sleepover I can recall is when my friend who has T1D and happens to be a triplet mom invited Jack to a sleepover with her trio. Talk about peace of mind! I had a trusted friend scurrying around at 3 a.m. among a sea of kids in sleeping bags, trying to wake my son to do a finger stick. Friendship doesn’t get any better.
Self-Care Is: Finding Your People
Speaking of friendship: Surround yourself with empathetic people who will genuinely try to understand what you’re going through. When you’re doing less explaining and more expressing, then you know that you’ve found your people. Many families with a child with T1D will seek out other T1D families, because we can laugh and cry together through our shared experiences.
That said, self-care may also be choosing how much of your story to share, within the diabetes community or outside of it. In the early months after Jack’s diagnosis, during the diabetes honeymoon period, his blood sugars would fluctuate significantly, which caused us a lot of stress. When I complained about this to a friend, she said it sounded like Jack had a “very bad case” of diabetes, which made me feel bad. I tried to explain that he was typical.
T1D is not well understood by the general public. Further, you will hear lots of unsolicited stories of people’s friends and relatives who had complications from (usually type 2) diabetes. I can recall a man I once worked with who had pre-diabetes and asked me a litany of questions about how my son was diagnosed, what his symptoms were, and what his A1C was. As he droned on about how great his own numbers were and how his doctor was so pleased with him, I realized that he was using my son’s story to assuage his own fears about getting type 2 diabetes.
Now I’m more prepared when faced with these situations, and I won’t let myself or my son feel exploited for someone else’s gain. When I share nowadays, I want people to appreciate the complexity that goes into living with T1D, but more importantly, I want them to respect how our family’s discipline, determination, and grit has met this challenge.
Self-Care Is: Filtering Your Newsfeed
As you begin to broaden your circle and connect with the T1D community, you might occasionally encounter stories that cause you distress. Recently, after hearing a CGM low alarm in the middle of the night, I checked on my son who was already treating the low, and then I returned to bed. Unable to sleep, I took out my phone and started scrolling through social media. A publication that I follow displayed a very disturbing image in an article about low-carb diets. The article’s fear-mongering was intensely upsetting to me. I’m fully aware of the worst-case scenarios of diabetes complications. They weren’t educating me; they were using scare tactics to get readers to adopt their view. As an act of self-care, I immediately stopped following that site. Being traumatized is not going to make me a better T1D parent.
Taking control of your smartphone is good self-care in more ways than one. With the availability of 24/7 blood sugar monitoring via CGM data sharing, you might be tempted to look at your child’s levels all the time, despite having alarms in place for highs and lows. This can lead to anxiety and burnout. You are not an air traffic controller who is getting paid to study a monitor; those high-stress jobs have a beginning and an end each day, otherwise the work would not be sustainable. Give yourself and your child a break and rely on the alarms, or train yourself to look only at certain intervals. And remember that if your child is of a certain age, they likely have their own screen and can be quite capable of responding to their own blood sugars. Since our family experience with T1D has spanned Jack’s late childhood into late adolescence, I have learned to progressively let go more with each year, and now I have a responsible college-bound young man who takes pride in his proactive approach to his condition.
Self-Care Is: Letting Go of Mistakes
Taking our family on vacation to a remote village in the Swiss Alps was a thrill, but what would have been a small misstep for any other family became a bigger deal when I decided to carry my teen’s heavy backpack down a very challenging mountain trail. I should have listened to him when he said he was completely fine to carry it. I got overzealous with my hike and ended up much further along the trail with my younger son, leaving my teen without his diabetes supplies. The next thing we knew he was going low with no source of glucose and no way to turn off his pump. I spent too much time on that precious vacation lambasting myself for not listening to my son and separating him from his supplies. The only way to let yourself off the hook for mistakes? Learn from them. I will know better next time.
T1D is a labor-intensive condition for not only the child who has it but his caregivers. While self-care for some might be pedicures, bubble baths, or retail therapy — and that’s all perfectly fine — for me, as the parent of a child with type 1 diabetes, it’s something entirely different. It’s being honest with myself when I’m down or tired. It’s giving myself permission to be a real person and not a 24/7 endless source of good cheer and superhuman stamina. When I show myself some compassion it helps me to recharge and recover. That, in turn, makes me a stronger parent, capable of showing more empathy for my child and the countless others going through the same experience.
So pat yourself on the back for all that you do as a parent to a child with type 1 diabetes. You get an A for effort in my book, and you owe it to yourself and your child to find the exact brand of self-care that you deserve.
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.