As a person who has lived with type 1 diabetes and celiac disease for almost 20 years (and fibromyalgia for about 7 years) I’ve worked with my fair share of medical professionals. Finding or creating the team that truly fits your needs and supports your goals is a lot of work, and it’s also important to feel good about going to your appointments.
No More Shame and Blame: Helping Your CDE Learn How to Give You the Support You Need
It’s easy to forget that you hired your certified diabetes educators (CDE). They work for you, not the other way around. Your CDE’s role is to help you and support you in the totally overwhelming task of managing blood sugar levels. So, if your CDE appointments leave you feeling shamed, guilty, powerless, and void of any motivation, there may be a few things you can do within the conversations you have with your CDE that can give you the jolt of power you need to maximize your results. And here’s a little hint: they involve you being in charge of that conversation, not the other way around.
The “Non-Compliant” Diabetic: A Term That Should Be Obliterated From the Medical World
Every three months you take a “test” that essentially gives your CDE the information they need to make a big ol’ judgment, even if that judgment is never said aloud: good diabetic or bad diabetic. Or, my least favorite term: non–compliant diabetic.
The problem with any of the above (good, bad, or non-compliant) is that they all imply that managing diabetes is easy. That all you have to do is follow the rules and—poof—your blood sugars will be what they ought to be.
The moment you feel judgment coming from your CDE is that same moment you might be tuning out, because that feeling of judgment actually reveals a lack of empathy for just how overwhelming diabetes can be every single day—no matter what your A1C is. If it were easy then the profession of being a CDE probably wouldn’t even exist.
If you’re feeling judged at your next appointment, try saying something like this when your A1C comes back at a higher number than your goal: “Okay, I want you to know that I know this is high, and I know my blood sugars have been high. But this stuff isn’t easy….”
Give your CDE a moment to think about this, and even to hopefully reply with empathy empathy: “You’re right—managing diabetes is not easy!”
Then, ask for the help you need. Too often, at the doctor’s office we’re made to feel as though what they give us is all they have to give, but it’s quite possible that they have another version to give… you just need to ask for it. (They aren’t psychic!)
Here are a few ways to ask for that help:
- “I’m having a hard time with my diabetes right now because ______(personal example goes here)__________. Instead of focusing on the A1C right now, I think it would really help me to focus on trying to _____(examples: take daily walks, eat breakfast regularly, cook more meals at home, start meeting with a therapist, repair my relationship with my parents, get a healthier job, etc.)____.”
- “The reason my blood sugars are so high lately is because ____(examples: I’m binge-eating every night and I can’t stop, I hate taking injections, I’m afraid to see the number on my glucometer so I don’t check, I’m feeling really depressed and I don’t have the energy for diabetes right now, I can’t afford my medication, I’m so overwhelmed by diabetes responsibilities that I just give up). Instead of focusing just on the A1C, could you help me figure out how to address this other issue that’s inevitably having a huge impact on my blood sugars?”
- “To be really honest, the reason I haven’t felt motivated to manage my diabetes lately is because my appointments leave me feeling guilt-ridden, like I’m a horrible person because I can’t be the perfect diabetic. I really want to look forward to meeting with you, and I want to feel like we’re on the same team instead of feeling judged. Can we talk about how to change that so it doesn’t feel that way?”
This is about you taking control of the conversation. Standing up for yourself. Expressing yourself. If you were at a restaurant and your meal was served cold, you would do something about it, wouldn’t you? You would let them know that that’s not what you ordered and definitely not what you’d like to eat or pay for. The same simple logic applies at the doctor’s office, too—bearing in mind of course that an adequate amount of thoughtful respect should be applied in both the restaurant and the doctor’s office!
Your CDE works for you, but they aren’t mind-readers either, and their schedules are jam-packed, and they’re juggling a slew of personalities throughout the day as they meet with their patients. You need to take control of the appointment by expressing your needs, explaining your obstacles, and asking for the help you want instead of just accepting the version of help they’re serving.
If the idea of actually speaking up (like, really speaking up) at your next appointment feels like something you can’t do… you can always just send this article anonymously, too. You never know, you might accidentally help change the way your CDE communicates with several patients instead of just how they communicate with you. (And simple tip for any CDE who is reading, just ask: “What can I do to help you?” and then… listen.)