In my recent post about six things all new people with diabetes should know, I mentioned the importance of having a supportive healthcare team and the impact that can have on your overall management and quality of life. Today, I wanted to dive a little bit deeper and share some of my story around the trial and error of finding providers who worked for me. It’ll be part tell-all and part educational, but hopefully helpful to other people on a similar journey! 

My Experience

To set the scene, I was diagnosed at 10 years old (you can read the full story here) and was registered with our local diabetes clinic shortly after, a small office that only ran a few days a month at the hospital. The care team there consisted of a dietician, a nurse, and a pediatrician who acted as the endocrinologist and was available every other month for half a day. The clinic was primarily for adults with Type 2 diabetes as there were only a few children in the area with Type 1 diabetes, so the team wasn’t as familiar about treating T1D. A lot of the advice they gave was around lifestyle management and avoiding certain foods and activities. I can remember it felt like pulling teeth for them to consider letting me get an insulin pump (they had been recently approved in Canada). It was really hard to get an appointment and they always, always ran late, often 2-3 hours behind, waiting on the pediatrician to finish with more pressing matters in the hospital. That I completely understand, but it often meant that the appointments were very rushed when we were finally seen, with minimal pleasantries and little time for questions. 

Pretty quickly, I started to dread these appointments. At 11 years old, I hadn’t really encountered dread or anxiety before, but sitting there waiting for hours knowing I was about to get grilled over my blood sugar log book and A1c result is something I’ll never forget. The meetings were tense, a weird triangle of negative emotions passing between the healthcare team, my parents, and myself. I knew that I would get negative feedback about my blood sugars from my healthcare team, and then go home and get lectured by my parents on how I needed to do better. I spent the first ten years of having diabetes always feeling like I was letting someone down, even when I was trying my best. 

The issue, I believe, is that I didn’t have the tools and support I needed to succeed in that environment. As a child and teenager, the scare tactics my care team used didn’t feel real (did I want to have use of my feet at 60? Sure, but 60 was a lifetime away, and remembering to bolus before eating just wasn’t top of mind). Since I grew up in a small town, the only other care option was to drive 1.5 hours into Toronto to visit SickKids, which would require a day off of school and wasn’t convenient for my parents to do every three months. In my mind, there were too many other priorities that came before diabetes, like my friends, getting good grades at school, and extracurriculars to apply to post-secondary school. I knew I needed to prioritize my diabetes, but I just didn’t have the capacity to, and it seemed like wasted effort because it felt like what I could do was never enough. I would fight my parents as well, not wanting them to be involved as I pushed for independence. I hated my diabetes and hated feeling like I was bad at it all the time even though it took up so much space in my life, and avoidance became my way around that. 

I would become very defensive in the appointments I did attend, and came up with every excuse to get out of seeing my care team. I had developed this mindset that doctors and nurses equaled feeling like a bad person, so when I went away to university at 18 I didn’t bother trying to find a new doctor now that I had aged out of the pediatric program. I visited the one I was referred to in my hometown (an internal medicine doctor who didn’t specialize in diabetes) once a year over the holidays for prescription refills. This is essentially how it was until I graduated school. I bounced around to a few doctors when that internal specialist had too many patients, but I didn’t develop a relationship with any of them and never saw them more than once or twice. Diabetes was very much on the backburner and these appointments were purely transactional. 

How I found a doctor I liked & the impact it had on my diabetes

Once I moved to Toronto, I used a walk-in clinic to help get my prescriptions refilled, and they made a referral to an endocrinologist’s office at one of the major downtown hospitals. After waiting about six months, which is the common timeline, I got a call that I had an appointment with one of their doctors to become a full-time patient. I didn’t think much of it and viewed the appointment as a necessary evil, if I’m being honest. 

However, when I arrived and met the doctor, I was blown away. Despite my frosty exterior, he sat with me for over 30 minutes, asking about what my experience had been with diabetes up until that point (I was chronically “noncompliant”), and what supports I thought I needed. There was no discussion of my blood sugars, no reviewing of my pump settings, and he didn’t even tell me what my A1c was (the point I hated most at each appointment, as it was always above the recommended range and felt like getting a bad result on a test). For the first time ever, it seemed like the numbers didn’t matter, and how I was feeling and what I needed to succeed did. I left that appointment cautiously optimistic that maybe something would be different here, but still felt very guarded. 

I’m happy to report that my hunch was right. I’ve worked with that same endocrinologist for the past six years and it’s been such a wonderful, supportive experience that I previously thought didn’t exist. I’ve definitely matured a lot from when I was younger and taken more ownership over my diabetes which was a big piece, but his approach made me feel safe to admit things I didn’t know, like how to adjust my insulin rates to deal with my period (I would just wing it each month), that I regularly forgot to pre-bolus before eating (oops), and hadn’t figured out how my body reacted to different kinds of exercise. These were all things I previously would have pretended that I knew with other doctors for fear of judgment and lack of trust. I used to be worried about admitting that I had had diabetes for X number of years but didn’t know things they assumed I did, so I would just avoid the conversations. That’s not to say I was uneducated about my diabetes, but I hadn’t yet taken the time to really get to know what impacted my blood sugars the way I needed to. 

Since building up a healthcare team that I really get along with, my diabetes management has done a complete 180. My A1c is now in the 5.0-5.5% range (which used to seem impossible given where I was starting from) and I’m no longer fighting extreme highs and lows each day. When I spent some time reflecting on it, I realized that working with a doctor I trusted and who didn’t judge me was probably the biggest catalyst in my changes in managing my diabetes. Before, I didn’t know that was possible and I continued this narrative that I had picked up over the years that I was a “bad” diabetic because that’s how I always felt before. I wish I could go back and tell 14-year-old me that I wasn’t bad, I just hadn’t figured it out yet. 

I’ve since taken the same mentality and applied it to all of my healthcare team members. I’ve tried and switched many providers, such as podiatrists (feet professionals), eye doctors, dieticians, and even massage therapists, when they weren’t working well for me. As people with a chronic condition, we have enough to worry about without dealing with uninformed or judgmental professionals who make us feel less than the best. Everyone with this disease is trying their best, whatever that looks like to them, and your healthcare team needs to understand and encourage that effort. 

Tips for when you can’t switch providers

Now, I recognize that there is definitely an element of privilege at play here. It’s easier to try different providers when you live in a big city and have government or private insurance. There are often long wait lists to switch care teams, so I know it’s not something everyone can easily do. However, if you find that you’re feeling that a sense of dread seeing your care team, it might be worth weighing the pros and cons of trying to switch. I’ve often wondered if things would have gotten better for me at an earlier age if I had gone to SickKids and gotten a fresh start there rather than just taking the simpler option of sticking with my existing team, but I’m glad I finally figured it out. 

That being said, if you truly can’t switch to a different provider right now, here are some tips I’ve used in the past to make the experience a bit more tolerable: 

• Be vocal about when you’re feeling uncomfortable, and share why 

• If you have particular things you find upsetting (certain words, labels, being told your A1c right away vs. at the end of the appointment, etc.), tell your care team and ask them to avoid these things as much as possible

• Bring a supportive friend or family member with you

• Ask for virtual or telephone appointments if they’re available so you can be in a physical environment you’re comfortable in

• Remind yourself that it’s impossible to be bad at having diabetes. It’s an ever-changing thing and we all do the best with the information we have at the time. You’re not a better or worse person based on how your diabetes is managed. (This is a reminder I need from time to time!)  

I hope this post encourages you to evaluate your relationship with your care team. It should be a partnership where you’re solving problems and making tweaks together, not a place where you go to be told what you’re doing wrong. Diabetes is a tough disease on the best of days, you deserve a team cheering you on from the sidelines!