The topic for this month’s Diabetes Social Media Advocacy (DSMA) blog carnival is a great one! It prompts us to directly address our healthcare 
providers (HCP) and certified diabetes educators (CDEs), telling them what we’d like THEM to learn from the Diabetes Online Community.
That’s a very important question, as we’re constantly thinking about how much we want our docs and educators to actually listen to us patients individually, rather than treating us all like textbook samples.
So what can diabetes educators/HCP learn from the DOC?
To illustrate my “ah-ha moment” on this topic, I’m going to make some confessions that may surprise you a bit (or not):
A month or so ago, I blogged about finding a new endo who’s been a type 1 himself for more than three decades. The status as fellow PWD was a welcome addition to the patient-physician relationship! It’s something I’ve been wanting for a long time, and it became more urgent to me lately based on my current endo’s brushing off of the DOC, so I decided to make the switch.
The first appointment with my new endo was scheduled for Oct. 17.
I took the time to fill out all the newbie paperwork, and even held off on getting prescription refills to accommodate this change; I was all set to make my way to the new office.
But it didn’t materialize.
I ended up cancelling the appointment, deciding to stick with my current endo.
The reason?
As much as I want my current endo to “get” what the DOC is about and how this community has helped me, I realized that it’s just as important for me to accept that my doctor is qualified regardless of whether or not she understands online communities. I can’t base my new doctor decision on delusions that some fellow PWD will have all the answers or somehow present a magic potion that will make my D-stars align.
The bottom line: My D-management boils down to my own desire to do what’s needed. My doctor can’t help me if I’m not willing to help myself.
I realized that in my case, it was the desire to have a doctor who might more embrace the online community and peer-to-peer support that drove my decision to change endos. It wasn’t so much about being treated by a fellow PWD per se — although I can see how some people would want the kind of empathy that comes from a doctor who is “walking in our shoes.”
I realized that together, my current doctor and I have accomplished a whole lot of good during the past several years, and that she’s as sharp as a newly-minted lancet. In looking for a new doctor, was I going for that PWD-to-PWD connection that I’ve come to cherish in the online community?
No, that wasn’t it.
Honestly, I’m in a place where my blood sugars have been all over the map, way too high and sometimes dipping way too low. I notice this when I’m testing more than a couple of times a day, that is. My carb-counting is scattered at best. And I am just skating along what seems like the fringe of burnout lane. No matter what a new endo with diabetes might get and understand from his or her own D-Life, that doesn’t change the fact that it’d be a waste of both our times for me to make an appointment now.
And so, it comes down to me. This is the point where I need to get back on track, and start moving toward better D-management.
When the time comes for me to get back to seeing my endo, I’ll have some perspective to share in order to strengthen our patient-physician relationship.
The fact is that peer-to-peer support from the DOC has changed my life and made me want to take better care of myself. The irony is that nothing is perfect (!) and that despite the help I’ve received from interacting with D-peeps, right now, as I write this post, my D-management is slacking.
Going to a hospital or doctor-sponsored website to log my blood sugars or follow some pre-approved and scripted management program isn’t going to help me do better. Ever. No, it’s the organic person-to-person relationships that help pick me up out of a slump, when I need it most, like right now. THAT is what I want my doctor to know.
The sharing of our experience when a 3 a.m. low wakes us up in cold sweats, or when a high blood sugar keeps us awake because of unquenchable thirst and tingling toes… that is what helps keep me sane. My God, am I the only person on the planet going through this right now?! No, the DOC is there with me!
Knowing that, maybe I
can convince my endo of the benefits of being active with other patients online — and why it’s so important for her, and other doctors, to embrace the DOC and share these patient communities and blogs and social media resources with the rest of the PWDs they see as patients.
To quote something Amy said during a panel discussion at the recent MedicineX conference: “These patient communities need to be part of the prescription.”
And someone else opined, “We want doctors to realize that peer-to-peer support is just as important as a diagnosis code.”
Embracing those points, I want my HCPs and CDEs to understand that patient-led online activities are in no way meant to replace what they do as trained medical professionals. Instead, they can and should view the DOC as an important part of their patients’ toolbox to treat and cope with their diabetes day-to-day. It’s the ideal way to connect patients with each other to get the support they so desperately need, and in doing so, they as medical professionals can learn how to truly impact the behaviors of the patients they are trying to help.
And then, together, we can determine how to come up with the best plan for each individual’s diabetes management and overall health.
This is our October post in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at the DSMA website.
Very well written, thanks. I am an endocrinologist who was recently introduced to Diabetes Mine by a patient of mine. I have found this site to be extremely useful in helping me relate to my patients and in keeping me up to date on diabetes from a “real world” perspective. The times are definitely changing in the world of medicine and keeping an eye on social media is a good way for us to stay up to date.
Mike such a great article. I feel like you wrote this article about me… Heck you did, you wrote it about so many people like us, that are sharing in the same challenges.
I don’t want to hampered down by another Dr ordered excel sheet or management schedule. I know I am going to likely fail because my life is not made up of columns and rows, but more like a ski slope trying to avoid obstacles and dodge in advance.
We are so lucky to have the added support of the online community we share, we can find people just like us. If my Doctor still thinks the internet is fulled with misinformation well so be it, I am not the one that is going to change their opinion… but they have a degree for a reason and it is up to “us” sometimes to figure out how best to take advantage of their knowledge and resources.
-Bill
As a former victim of burnout, my doctor was absolutely essential to getting my back on track. Every appt a goal was set of a time of day to ‘fix’. I wasn’t berated, I wasn’t told to change the whole world – I was given baby steps, and that is what worked for me.
If you are struggling with A1c’s, my top two picks of goals?
1. nail your overnight basals: eat bacon and eggs for dinners and see if your basals can keep you ‘good’ overnight. This is like 30% of your time for most people, and b/c we generally don’t eat overnight, it’s the easiest time to fix.
2. once you’ve fixed that, do daytime fasting basal tests
I prefer experiments where I write EVERYTHING down for a day or two than keeping immense records that aren’t ever looked at.
Lastly, after getting basals right, I started tackling meal and snack time carb ratios by literally eating the same thing at different times during the day (eg. granola bar).
GOOD LUCK!
We can’t be textbook cases. Textbooks are becoming anachronistic, out of date by the time they’re printed. The good healthcare pros are curious and eager to learn, from us as well as the latest journals. They provide the pieces to the puzzle we are missing.
PWDs don’t always give the best advice. I had a diabetic CDE tell me I didn’t need to change my set every 3 days and wonder why I tested and changed my basal rates(as well as my lancets) so often. I didn’t do it so she could check off another box, so she’d look good. I did it because I had a show to do, an audience to entertain, and I wanted to make sure I got all my laughs.
Great post Mike. My first endo was a pwd and I do miss that in my current situation. He really challenged me and knowing that he was dealing with same challenges was encouraging. My current doc is much more likely to just be happy that my A1c is better than most of her patients – rather than challenge me to do better. Also my first endo and I problem-solved well together often because he had been through similar things (and used the same pump). I also had a cde at the same time who was a pwd and the combination was great. So, while I agree that having diabetes isn’t the most important quality in an endo, it can add positive benefits to the relationship.