Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us!
It’s not one episode that sticks in my mind, but rather a couple of years of them. It was probably only 8 or 12 doctor visits, but they were enough to give me a few years of functional burnout.
I was appreciative of the fact that the doctor gave me a discount for paying cash (well, okay, a check- but you get the idea). I was appreciative of the fact that the office could do an A1c test on the spot with a fingerstick. I was appreciative of the various insulin samples that I got. BUT neither the doctor nor his staff seemed to put it together that I appreciated those things because I was uninsured. That meant that as soon as those sample vials they so generously gave me at each appointment ran out, I was back to buying N and R at WalMart. I wasn’t testing as often as they wanted because at almost $1/strip, I couldn’t afford to. I let my blood sugar run higher out of fear of going low. I had a Glucagon kit, but I was terrified of having to use it- because I wasn’t sure I could afford to replace it.
None of those things ever seemed to factor in as valid explanations for the fact that my A1cs were running in the 8-9% range.
Here’s what I wish that doctor would have said:
“I understand. I get that the management regimen that I would recommend isn’t a realistic one for an uninsured Type 1. I get that there are other external factors at play, but let’s see what we can do to help you do the best you can with the tools at your disposal.”
I actually wish that instead of giving me a few samples of whichever rapid-acting analog the pharma reps had dropped off that month, he would have realized that I wasn’t going to be using those same insulins by the time I came back in 3 months.
I wish that doctor would have said, “Rather than having your sugars be all over the place because you’ll be using new insulins for a month and then R and N for the next 2 months, let’s figure out a way for you to use those old insulins as effectively as possible.” I wish he’d given me different advice about testing patterns to maximize the value I got from those precious test strips. Understanding, not blame; and working with the patient’s reality rather than trying to create a new one that was unattainable. Those first two words that I wish the doctor had said are by far and away the most important: “I understand.”
Now, of course, things are different. Thanks to the ACA, I have insurance, and as a result of that, I’ve got all the tools I need to do a good job managing the D-beast. I don’t need to ration test strips. Or insulin. I have a pump, so I can actually manage my fluctuating basal needs throughout the day. I’ve got a Continuous Glucose Monitor, which gives me enough info to identify trends, and warns me of problems before they get too bad. I consider a bad A1c anything over 7%.
The other key component of the puzzle is that I’ve got a doctor that understands- understands that Diabetes is 24/7/365, and that many of the things that influence blood sugars aren’t necessarily controllable. My doctor understands that the ideal isn’t always attainable, but will try to help me keep getting closer. I’m confident that my doctor will do what they can to help me make that “best realistic” reality happen- and keep it happening. If I need more insulin, or test strips, or extra infusion sets so that I can change them on schedule even if one or two fail, my doctor does everything they can to make that happen. My doctor does those things because they UNDERSTAND.