Karen Graffeo was diagnosed with Type 1 diabetes when she was just 11 years old in 1979. Since then she’s become an active diabetes advocate and a prolific blogger on her web site, Bitter~Sweet, because “life with diabetes isn’t all that bad.”
Scott K. Johnson was diagnosed with Type 1 diabetes in 1980 and began blogging about it in 2000 from the perspective of “helping you see your strength.” Of the struggle that has developed his own strength Scott writes, “Diabetes is always on my mind, whether I like it or not. In my everyday life, I am alone. Even with my closest family and friends by my side. Living like that is hard and isolating.”
A chronic autoimmune disorder in which the body produces too little insulin diabetes affects almost 30 million adults and children in the US, with 1.7 million newly diagnosed cases each year. Management of diabetes relies on monitoring glucose levels and delivering enough well-timed insulin to create homeostatic stability. In a busy lifestyle the constant daily attention to basic health can not only detract from active living but also create emotional blowback. Graffeo explains, “I struggle with depression on an ongoing basis. Not constantly, but there are periods in my life when things get really tough.”
The all-consuming quest for diabetes wellness can easily eclipse personal and professional experiences, leading to a minimized, “less than” lifestyle. Avoiding the depression and anxiety that constant symptoms and health management arouse requires diligence. Mindset becomes critical, particularly in the areas of self-advocacy and self-care. With many years of personal experience Graffeo and Johnson show what is courage when it comes to living with diabetes. I caught up with them recently and asked their advice for approaching this illness from a position of empowerment. They suggested these 5 strategies as part of a foundation for success:
Support and community: From husbands and wives to medical professionals to the on- and offline diabetes community the role of connection plays a significant part in management. Sharing your story, struggles and triumphs with those who do (and don’t) live with diabetes can be cathartic and therapeutic.
Avoid the quest for perfection: Graffeo explains that perfection “is hard to achieve— especially with blood sugar numbers. That can be so frustrating, and when I’m frustrated my self-care declines. I’ve been working hard to realize that it’s okay not to be perfect, as long as I keep trying my best.” Johnson echoes this idea, using the mantra “focus on progress, not perfection” to help him develop a positive perspective.
Acknowledge emotions: Self-pity would be natural in certain moments of managing any chronic illness. To combat this both Graffeo and Johnson stress the importance of acknowledging and respecting such feelings. Taking the time to process emotions, too, is key and doesn’t take long, Johnson shares, because “I soon realize that yes, there is loss and grief and everything associated with it, but diabetes is something that I can manage well enough to allow for an awesome life.”
Develop prospective: Diabetes requires an enormous amount of management and planning that consumes time and brainpower (Johnson estimates 30% in any given day). In such a scenario it would tempting to define life by the diabetes focus, but Graffeo has another perspective: “I live my life with diabetes, rather than despite it. It’s just one of many parts that make up who I am.”
Address depression: How to snap out of depression poses an important problem in diabetes. Johnson recalls, “Battling depression was really hard. I didn’t know it at the time but depression is more common for people with diabetes. I was way down the hole before I realized what was happening.” With support from his wife, a good therapist and identifying the right medication Johnson “overcame depression through determination, patience, and perseverance.” Graffeo’s had her share of depression, too. What helps her most to shift out of that mental space is to “just kind of ride out the cycle, and also to blog about my struggle. The process of…typing it all out in a blog post helps me move past it and get back on track. I know this may not always do the trick, and at that point I’ll add a mental health professional to my diabetes care team.”
Instances that remind us of the fragility of health offer growth opportunities. Indycar driver, Charlie Kimball, shares, “The typical response from people when I tell them I’m diabetic is, ‘Oh, I’m sorry to hear that.’ You know, I’m not. I’m a better athlete because of diabetes…I’m more aware of my training, my fitness and…nutrition. I’m more proactive about my health.” In this turnaround perspective Kimball, like Graffeo and Johnson, grounds himself in a sense of action—the key element in empowered management of any life situation.