Sometimes, I just want to scream at my endocrinologist.
I'm not a textbook diabetic!
Don't say I am "uncontrolled"... I'm living with diabetes every day!
No, I DON'T know why that number from three weeks ago was 400...!
I'm not checking my blood sugars as much because I'm burnt out, and it's not like I can just flip a switch to make myself feel better!
The Diabetes Online Community understands... why can't you?!
You just don't get it, doc!
Some variation of these pretty much come to mind every time I visit my endo, which is typically every few months.
Ever feel that way?
You might say my endo and I have a rocky relationship. We don't see eye-to-eye on everything, but she knows her stuff and is highly qualified to do what she does. And she helps me when I need it. Yet I am still frustrated... obviously.
I've been with this endo for more than five years now, after discovering her within a 10-minute drive from my house a couple years after moving to Indianapolis. That first year, I didn't see the need to find an endo and went without one, just getting all my prescriptions from my primary care physician. The first endo I found was just 10 minutes from my then-workplace, but he was a complete "yes man" lacking the ability to be aggressive in helping me with my D-care, I thought. He simply agreed with everything I said, even telling me all was fine when I clearly wasn't doing what was needed!
So, in finding Dr. P — a highly-coveted and respected endo in this area — I had found someone "better," a doctor who at the time I felt was "good enough" for me. There's a lot that I like about her: the fact that she allows for e-logging of BGs and doesn't charge for in-office pump and CGM downloading, she can fine-tune a basal dose or bolus calculation like no other I've seen when she has the full picture, and her reputation in this field is stellar and tough to compete with. Oh, and despite how effective or ineffective the office visits are, we typically have about 17 minutes or more to talk.
These positives are tough to ignore, and they're a large part of why I've stuck with her for half a decade.
But, for some time now, I've been feeling that I wanted more — and I'm not sure that "more" is something she can provide.
Put simply: she isn't living with diabetes and that is what I've been searching for in an endo. I've wished for someone who is a fellow PWD, who "gets it" and doesn't seem like they're trying to fit me into medical textbook definitions.
As good as she may be medically, my endo doesn't seem to embrace the concept of online peer support that I find so beneficial for PWDs on the "emotional side" of D-management. While she doesn't dismiss it altogether, whenever I raise the topic and talk up the benefits I've found in the DOC and how this community has helped me, she just nods and smiles... before going back to focusing on the numbers in front of me and wondering how she can get me to "do better."
To me, it feels like most the time we're just trying to do the Endo Song & Dance with a metaphoric chasm between us.
More and more often in the past two years, I've found myself craving that understanding of a fellow PWD. This feeling came to light powerfully after a good friend and fellow D-blogger who's also living with type 1 shared the story of how his awesome new doc actually read his blog and helped him feel better about his D-management.
That made me want an improved patient-doctor PWD-connection more than ever...
One person in particular was on my mind, but being confined to an office job and with him being a good 30-minutes away from my home and office, it just seemed too "inconvenient" when I had a decent doc nearby. The time just never seemed right. My motivation wasn't there to seek out that change.
At the ADA Scientific Sessions back in June, it all started coming together at an evening event where I was meandering around chatting with friends, awesome advocates and industry leaders.
Suddenly, a familiar face appeared in front of me — that of a fellow diabetes advocate in Indy, who I serve on a local D-Camp board with and who works as a diabetes nurse and educator in my town. We greeted and I quickly learned that her husband was across the room.
Why does that matter?
Well, this man is a coveted endo here in Indy who happens to be a fellow PWD, living with type 1 himself since being diagnosed at age 12!
I'd come across his name a handful of times through the years and thought about reaching out to see if he was accepting new patients, but just never took the time to do that.
But now, this Philadelphia meetup set the stage. After returning home, I reached out and got some great news: Despite the front office line of "not accepting new patients," he's willing to welcome me in as a new patient!!
I'm beyond excited about this, though there's a little regret that I didn't take the initiative to make this happen sooner!
Now, since we're talking about my future endo and I've not discussed any of this with him yet, and because I don't really see the need to ID him by real name, I'm simply going to refer to him as Dr. Understanding.
Because, you know, he "gets it."
Obviously, this isn't going to solve all my issues and make me "the perfect" PWD.
Having a fellow diabetic as an endo isn't a magic potion that will lower my A1C or give me the ability to do everything right. No, I get that.
Most of my D-headaches and "uncontrolled" aspects come down to my own lack of discipline and willingness to do what's necessary. My A1C isn't as low as it once was (I got it down to 6.1% a decade ago and have hovered in the 7% range for years before slacking). And sometimes I don't test or change my infusion sets often enough, or I fail on counting my carbs, because I just don't care at that moment in time.
As my current endo and also my D-therapist Mind Ninja has told me: "It's you, not the doctor or device." Yes, I get that. There's validity in saying that we patients need to see the situation from our endo's perspective sometimes, and not just the other way around.
But the potential for understanding in having an endo with diabetes is strong, and I think that maybe we can get past some of the frustrations that come with us not looking at diabetes from the same perspective.
We can bridge the gap, so to speak.
What I need is someone who not only knows their textbook stuff, but someone who can be aggressive while also offering a high level of understanding for what my life with this disease is really like. I need recognition of the real struggles of I'm going through, that it's not all about numbers. I need peer support, especially the kind of thing you find in the DOC. That's an incredible resource that more folks in the medical community should embrace to help their patients!
That's what I'm searching for. Maybe this new guy won't be "the one," or some cons may outweigh the pros at the end of the day... Who knows? We may not be the right fit. But least I'll give it a shot (ha!) This just seems like the right time to take this leap and try something new... We'll see.
Now I have to break the news to Dr. P. And get my medical records transferred. And take care of some long overdue lab work. And set up that first appointment. See? The change is forcing me to be proactive already.
I can't wait for a fresh start. I will let you all know how it goes! Please let me know any experiences you may have had with your endo about "getting it," and if you've ever had the desire or opportunity to have a fellow PWD in that role.
What do you look for when searching for a new doc? We'd love to hear about it