The 6 things all newly diagnosed people with diabetes need to know
When you get a life-changing diagnosis like diabetes, it can feel like someone strapped you to a rollercoaster you didn’t ask to go on. Regardless of whether you have type 1, type 2, gestational diabetes, or any other type, suddenly you’re forced to navigate a whole bunch of challenges and it can feel overwhelming, fast.
While there’s no denying that living with diabetes is hard, there are some things that can make it easier. Here are six things I wish I knew when I was newly diagnosed:
A few bad days, or even a few bad months or years, won’t matter in the long run
This might not be the first tip you were expecting, but I stand by it. A lot of the conversation around diabetes and managing blood sugars can make it seem like you need to be perfect all. the. time. to prevent bad things from happening, and that’s just not true. Sometimes you can do everything “right” but your body is fighting off an illness you don’t know about, your hormones are acting up, or you’re on vacation and just can’t carb count as regularly as you normally do. While getting to know your body’s patterns is important (especially in terms of illness, activity, and hormones), a few rough days of “bad” blood sugars (which looks different for everyone) doesn’t mean you’re doing a bad job, it just comes with the territory. If you’re not familiar with my story, I had many years of not-so-great diabetes management as a teenager and came out just fine on the other side, probably even better for it. If you’re looking to tighten things up, try to pick one small thing to do a day that will help you feel better, whether it’s going for a walk after dinner or scheduling that follow-up appointment to get help. Know that crappy days and times will always happen, even if you do all the right things, but it’ll be okay.
2. It’s normal to feel overwhelmed
Going off of the last point, you will absolutely feel overwhelmed at times, and that’s okay. Diabetes is hard—you have to anticipate a million possible outcomes and make decisions that can impact your whole day, and that’s just something most people don’t have to do. I’ve felt overwhelmed many times when trying to decide if I have too much insulin on board for an impromptu workout class with friends, needing to suddenly walk somewhere after dinner, or just trying to navigate illness without much info to go on. If you feel overwhelmed, instead of taking it as a sign that you’re not doing enough or not doing everything right, take it as a sign that you are doing everything you can and that’s why it’s tiring. When you’re feeling down, try not to add guilt to the mix.
3. You deserve a healthcare team that works for you
This tip was the one that changed the game for me and my diabetes management. As a child living in a small town, there was really only one option for the healthcare team I saw, and suffice to say that I didn’t gel very well with them. They were older professionals who weren’t very up to date with new technology or trends, and I would often fight against their old-school recommendations to avoid certain foods or activities (...and rightly so, there’s nothing we can’t do or eat while living with diabetes). Pretty quickly, I began to dread my appointments and would find any opportunity to cancel or reschedule.
When I moved to a bigger city after school, I was given the option to try out a few different doctors, and I found the most amazing doctor who has never made me feel bad and is always fully supportive of what I think is the right decision for me. As a result, my guard dropped and I was able to lean on that care team to support me in areas I wasn’t as knowledgeable, and my overall health got so much better. If you’re not loving your provider, I urge you to see what might be available to you in terms of switching to a different team, even if that means keeping certain members of your team and swapping out others. It can sometimes feel like you’re lucky to have any healthcare providers and should just put up with what happens, but I will die on the hill that everyone deserves a care team that makes them feel heard and supported.
4. You get to decide how much you tell people
As a teenager, my parents and healthcare team often encouraged me to use my story and politely answer people’s questions about my medical devices when out and about. This was an education and advocacy opportunity, after all! I quickly became an ambassador for a large foundation a few years after my diagnosis and regularly shared my story and answered the same questions over and over, both on large stages and during day-to-day life.
However, while I didn’t mind at first, after a few years I hated feeling like it was my responsibility to share my medical situation with everyone who expressed interest in my CGM or asked why I took a needle at dinner, especially as it often opened the floor for people to ask if I’d tried cinnamon or share that their grandmother suffered from complications of diabetes. Not the conversation I was looking for while picking up some things at the grocery store.
If nobody has told you yet: You don’t owe anyone anything. It drives me nuts that people ask at all, but there’s no shame in 1) pretending you didn’t hear them, 2) agreeing with whatever incorrect suggestion they’ve put forward (nicotine patch for my continuous glucose monitor is the most common one I get), or 3) just straight-up telling them that you don’t want to discuss it. If you feel like sharing or educating people, definitely go ahead, but don’t ever feel like you have to, and know you can change your mind anytime.
5. Emotional support is key
On paper, diabetes can seem like a disease of numbers and calculations, and it often is. But many people discount the mental toll it can take, whether it’s worrying about the future, burnout from managing other things along with diabetes, or just generally feeling like nobody quite gets it. If you find the mental load of living with diabetes becoming a lot, the key is to build up a good emotional support system to get you through the hard days. For me, this looks like sharing my feelings with my husband and family so they can step up and take other things off my plate as needed, and reaching out to friends in the diabetes community for tips and resources. I’ve also worked with a few great therapists who specialize in chronic conditions* and it’s been so helpful.
* If you live in Ontario, check out the JDRF & Diabetes Canada Mental Health + Diabetes Directory to find mental health professionals who have taken special training courses to work with people living with diabetes. This is brand new as of September 2023!
6. You’ll soon find a way to fit diabetes into your life; it won’t become your whole life
The title kinda says it all on this one, but I remember wondering if my whole life was going to revolve around my condition after I was diagnosed, as it definitely did for the first few months. And I was young at the time, so I can imagine that feeling is even worse if you’re diagnosed when you already have an established life and routine. But take comfort in knowing that soon you’ll be able to go about your usual activities and diabetes will only be a small (sometimes annoying) part of it. It looms so large in the beginning and takes up a lot of time, but begins to take up a lot less space in your life the more you get used to thinking about things like carbs and dosing insulin or medication. The best advice I can give is to keep living your life even as you adjust to your diagnosis so you can get used to what works and what doesn’t for you individually. Don’t let it keep you from doing the things you love, and I promise that soon you’ll barely notice it as part of your day-to-day life.
