If you could go back in time and share a message with your younger self just as you were diagnosed with diabetes, what would you say?
That question is one many of us in the Diabetes Community have pondered. Sometimes with a regretful mind, sometimes with a tinge of inspiration about what could’ve been different.
Life with diabetes can often bring about this type of reflection since most people with diabetes (PWDs) had no idea in the beginning that they were heading into an unending cycle of glucose monitoring, and a minute-by-minute struggle to balance insulin doses, food portions, exercise levels, and other parameters to achieve ideal blood sugar results.
So when DiabetesMine asked our social media community what they would have ideally told their newly diagnosed selves, we felt a huge appreciation for the variety of answers.
“Learn all you can because that one-page pamphlet the doctor gave isn’t even enough information to start.” – Enrico Rios
“Don’t get complacent. Don’t allow yourself to form bad habits.” – Chris Stocker
“A BG (blood glucose) number is just a number to guide you in what to do next. It’s not a pass or fail, good or bad.” – Kristin Kessler Stanley
“You are not your numbers.” – Katy Bowers
“I would go back a bit earlier, and tell my not-yet-properly-diagnosed self, those symptoms really are of diabetes but your rheumatologist got it wrong, it’s not type 2. You need help now. Get to an endocrinologist before you wind up in the ER (emergency room).” – Stacy Scott
“Give yourself grace. This is a lifelong disease that you are managing 24/7. There will be good days and bad days. What you eat really matters. Exercise really matters. Taking care of yourself in the early years really matters. It’s much easier to stay healthy than trying to do it after you’ve developed complications. Never stop learning. I’ve had T1D (type 1 diabetes) for 40 years.” – Michele Ann
“Select doctors that listen and give advice based on knowledge and sciences. I’m a T1D for 53 years.” – Cheryl Mayers
“Low carb is not the enemy. Yes, you can eat ‘like anyone else’ and give insulin for it. But in the long run, that is actually very hard on a body (ANY body). Embrace and be creative with low carb/keto-like recipes.” – Dna Helix
“Don’t take no for an answer from your healthcare team. If they won’t fight for you, fire them until you get what you want.” – Rachel Mercurio
“Invent the internet to make it easy to connect with other PWDs.” – Mike Ratrie
“Be serious about T1D but don’t let it hold you back. And learn, read, and inform yourself. That is what I did, all 52 years with it.” – Lizet Van Os
“I’d tell me and my diabetes that it’s pointless trying to fight it or hide it and that acceptance truly makes it easier.” – @DiabeticDadUK
“It never gets less scary. Buckle up.” – @Pancreassassin
“Unlearn what you have learned: Your body and life will be unique to you — the future will not be how things are today.” – Conrad Jarrett
“If your doctor doesn’t listen to your concerns that you may be diabetic despite a mountain of evidence that you are, run don’t walk to a new doctor. Work with an endocrinologist (especially if you have more than one endocrine issue). If you are an older adult and require insulin and your doctor immediately says that you are type 2 (diabetes) ask to be tested to see if you may actually have LADA (latent autoimmune diabetes in adults).” – Kimberly Tarbox
I wanted to add that my own T1D journey began at age 5, so what I would’ve said to myself would have to be age-appropriate for a child.
But truth be told, it was during my teenage years and early 20s when I struggled the most. I felt isolated and tried to push diabetes management to the back burner.
My behavior during those years had the biggest long-term effect on my life going forward: ongoing high A1C results throughout high school and college, and post-college probably led to some of the diabetes complications I’ve developed over the years. Mental health struggles eventually materialized, creating even more speed bumps to my D-management efforts.
Not until I found the Diabetes Online Community and began talking more openly about my own T1D and the issues many of us struggle with did it start becoming more clear that I was not alone and could navigate this with support.
So that would be my message to a younger me, one that I’d hope would be carried on through the most difficult times: “You Are Not Alone.” Possibly followed up by: “You Can Do This.”
Looking back, I feel that hearing those words and truly taking them to heart could have made a big difference for me.
Amy Tenderich, founder and editor of DiabetesMine, who was diagnosed in her 30s in 2003, agrees. “Even though I was a grown adult with a complete education and good family support, I felt lost and alone when I was diagnosed — like the only adult on the planet who would ever get this ‘juvenile’ disease, as they used to call T1D.”
“If I could go back and talk to myself then, I would say, ‘Do exactly what you did: Start a blog, reach out to others with diabetes and create a community. Just do it faster! Don’t wait until you’re desperate and crying yourself to sleep.'”