When Scott Johnson began his blog, Scott’s Diabetes (Scottsdiabetes.com), back in 2004, his goal was simple: He wanted a more public outlet for his personal journaling so that friends and family could better understand his struggles and successes as someone living with type 1 diabetes.
“I’m often the only person around who needs to do complicated mathematical equations before eating anything, before going anywhere, before mowing my lawn, shoveling snow, taking a walk, or before going to sleep at night. Diabetes is always on my mind, whether I like it or not,” he explains. “It’s healthy to share some of this.”
He’s been doing just that for 10 years now. “I personally get so much from the exercise of finding words and phrases to explain what’s going on in my head and heart that I’d be lost without it,” he says about the motivation to keep telling his story.
Blogging has also helped Johnson, who lives in Minnesota, to expand his personal support network to include other people with diabetes, parents of children with diabetes, and those involved with type 1 advocacy — from all around the world.
“There were four or five others who also started blogging [a decade ago] about their lives with diabetes. The diabetes online community took off, and hasn’t slowed down since. A handful of us have turned into thousands of us. The support and encouragement I find ‘out there’ is immeasurable, and plays a crucial role in my self-care,” he writes.
Likewise, as a parent of a child with type 1, keeping a blog to tell your family’s story can be a powerful way to express what’s on your mind and help you connect with other parents going through similar experiences. Ready to join the blogosphere? Check out these helpful dos and don’ts from Johnson and other top diabetes bloggers.
How much personal info should I share?
Joanne Cunha, a Texas mom who details her daughter’s experience with type 1 diabetes in the popular blog, Death of a Pancreas (Deathofapancreas.com), says that before doing any writing, it’s good to come up with some basic privacy ground rules for yourself. She learned this bit of wisdom the hard way. “If I could go back and do it again, I would use my child’s initial instead of full name and be a little more selective in the pictures I shared,” she admits. “Once that information is out there, you can’t get it back. I am very careful about how much personal and sensitive information I put out there about Elise, because it is, after all, her story. I would hate for anything I write to have a negative impact on her life down the road.”
Something else to consider before hitting publish on your first post? Choosing your words carefully so that you avoid crossing the line into offering medical advice. As Johnson puts it, “I stay far away from the details of my exact diabetes therapy. I share that I’m on a pump and use a continuous glucose monitor, but I don’t often talk about specific units of insulin, doses, correction factors, or the like. I think it’s dangerous territory to talk about anything that can be considered medical advice. I try to stick to spreading news and sharing my personal experiences.”
What do I write about?
Check out the first post of most personal diabetes blogs, and you will likely find a very moving story detailing the diagnosis day. You will also find struggles and successes with school, personal relationships, family, food, and everything and anything else in life that’s impacted by a diabetes diagnosis. With such a wide-open playing field, Kerri Sparling, who documents her life with diabetes on her award-winning blog, SixUntilMe.com, offers this encouragement to new bloggers: “Do share the things that actually happen. Do show what real life with diabetes is like, including the moments of feeling like you have it all figured out, alongside the moments where you’re pretty sure the whole thing is screwed up. All of it matters, because it’s real.”
What types of posts are popular?
Part of the fun of blogging is creating posts that resonate so much with readers that they leave you a comment or share your writing with others — and then come back to read more. What’s popular in the diabetes blogosphere? For Cunha, it’s recipe posts, posts that detail her favorite diabetes management tips and tricks, and entries that simply reflect the ups and downs of being the parent of a child with diabetes.
“I find the posts that resonate most with people are the ones they can find a bit of themselves in. When I share openly and honestly about our life with type 1, people can find a bit of ‘same-same’ in there. I think it helps them to not feel so alone, or like they are not the only ones struggling,” Cunha says.
How do I stick with it?
You may start off blogging with the best of intentions and even employ the many tricks of the blogging trade — like creating an editorial calendar to outline future posts; linking your blog to your social media accounts to maximize community reach; commenting on other blogs and leaving a link back to your own; and keeping your smartphone or a notebook handy to jot down any new topics that come to you throughout the day. Still, life can get in the way sometimes and keep you from sticking to your writing schedule.
So how do you stay disciplined with your efforts? For Johnson, it’s the connections he’s made from writing so publicly about his life. “There is someone out there that needs you and your way of communicating. They will be able to relate to you, your situation, and the way you tell your story in a way that they can’t relate to anyone else. Know that there is power in your story.”
Sparling keeps blogging for similar reasons. As she puts it, “Diabetes can be tough, but there’s no reason to have to go it alone.”
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.