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Minisode #9: Hey Doc! Listen up!

Diabetes Connections with Stacey Simms Type 1 Diabetes

Release Date: 02/27/2020

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Diabetes Connections with Stacey Simms Type 1 Diabetes

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The Baby-Sitters Club & Type 1 Diabetes in Media show art The Baby-Sitters Club & Type 1 Diabetes in Media

Diabetes Connections with Stacey Simms Type 1 Diabetes

The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times bestseller author and winner of the National Book Award Robin Benway. Robin loved the books as a child but was diagnosed with type 1 as an adult. Also this week, Mike Suarez turned his son’s story into an adorable picture book called In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful...

info_outline
The Baby-Sitters Club & Type 1 Diabetes in Media show art The Baby-Sitters Club & Type 1 Diabetes in Media

Diabetes Connections with Stacey Simms Type 1 Diabetes

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More Episodes

Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about?

Full transcript below

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Episode Transcription: 

Stacey Simms  0:00

This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available on Amazon as a paperback ebook and audiobook at Diabetes Connections.com.

 

Announcer  0:15

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:26

Welcome. This is one of our mini episodes, shorter episodes that I put together starting at the beginning of this year, just when I have something to say, news to share or anything that doesn't fit in the traditional longer format interview show that we do every week that drops on Tuesdays.

I am your host, Stacey Simms, and I want to talk to you today about well, I really want to talk to your doctors about something, but we'll get to why and maybe how to share with them. I want to talk to you about what are doctors think of diabetes, and I don't really mean our endocrinologists Just to hopefully know what they're talking about and stay up to date. I mean, the other doctors that we see or we bring our children to pediatricians, the doctors, the dentists, you know what I mean, right? There seems to be this disconnect between what the diabetes online community which doesn't speak in one voice, I get it. But what we have learned over the years and what we talk about all the time, in terms of there's a hashtag language matters, right?

There's this disconnect between what we as patients want, which is no blame and shame. Work with me, help me with resources, give me the information, let me make my decisions. And the physicians who many many, many times want to scare patients straight, you know, we're gonna give them a wake up call. We're going to show them how bad they're doing and that will make them do better. And this disconnect played out on Twitter recently and I want to share with you how it went and then I would ultimately was shared at a medical conference.

Before I jumped right in though I do want to Say with those doctors who are you know, in the scare em  straight kind of school, I really do think the intentions there are good. I don't know any doctor who wants their patient to walk around with a 14 A1C, you know who obviously isn't feeling well and is going to be in poor health. I don't think any doctor wants that. The question is, why don't some doctors listen to their patients more? Why don't they seem to believe us when we tell them what we think works and doesn't work. So that's my perspective. today. Let's go through what happened.

There's a guy on Twitter. His name on Twitter is @DGlaucomflecken. He says he's an ophthalmologist, a comedian, and a speaker. On February 17. He tweeted, “Want to know why diabetic eye exams are so important. I can take a 28 year old with an A1C of 14, show her a picture of a normal retina, then a picture of her diseased retina. Then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”  And he posted the pictures that he had just talked about now.

Kind of an innocuous tweet a couple of years ago, I probably wouldn't have thought anything of it. But and I was not alone here. There were some telling language in this that made me want to speak up. I'm going to link this up if you want to go through the Twitter thread. It is ginormous because a lot of people chimed in as you can imagine. I'm going to read a few tweets here. I'll just read first names from the people who tweeted this out. So these are the advocates who tweeted back

Megan wrote, “As someone who works in eye casualty for a while and has type 1 diabetes. I have heard doctors have similar conversations. I then also seen patients walk away upset and distressed. Living with diabetes can be filled with anxiety. I find it best not to feel that scare tactics aren't always the best understanding and empathy for diseases hard to manage may be better.”

Melinda wrote, “Did you ask her if she could afford her insulin and supplies? If she had a support network to encourage her or did you just decide to be Dr. Judgy Pants?”

Melissa wrote, “Do you know if she went to her car and cried from helplessness like I used to after I exams with an ophthalmologist who had This kind of bedside manner? It took some time to find a doctor who could help me create a plan instead of send me off alone and frightened.”

And then Mike wrote, “This mentality scared me into doing something better briefly as a teen. Soon enough, it led to hopelessness and years worth of higher A1Cs until love, actual good doctors and peer support inspired me to change how I lived”

I wrote “Curious if there are any long term studies showing this is effective, other than the patient saying, Wow, that's a wake up call. What is it like for them? 10 years down the road? Did it help hurt make no difference?” And I actually wrote “not being sarcastic, genuine question” because you know, Twitter, but then the ophthalmologist chimed in back.

And during all the time these advocates are saying these things, other doctors and other people are telling us how wrong we are. So the original ophthalmologist chimes in with, “I'm just showing people their own body part. I've never had a patient get upset with me for showing them pictures. I have taken up their own body part. I don't need a study to convince me to keep doing that.”

Another doctor said “Patients Like pictures. We do the same with coronary angiograms. In cardiac patients, a picture's worth 1000 words, also puts in their minds the idea of the now and the potential future, good practice.”

Another person a medical resident wrote, “I like it, it's hard to convince some patients without symptoms that keeping an A1C down to an arbitrary number is worth the effort of diet, exercise and expensive meds. This could help motivate many patients.”

And then he writes “Also, it's not the author's job, the ophthalmologist job to make sure the patient has all of the resources needed to adequately treat the patient's diabetes during their brief eye exam. That's our jobs as PCPs.” So that's what he's going to be or may be already is I can't really tell from his Twitter bio primary care physician.

Okay, so, literally, this went on for days, I kept getting notifications, because I kept chiming in, like, Are there studies like, oh, let's talk about this, you know, and, as you can imagine, it got pretty nasty sometimes. I mean, there's jerks in every Twitter thread on every side, so we're not going to talk about that. We're going to talk about the discussion and the disconnect because this is that fascinating.

Most of the doctors really believe this is a good thing, I'm so glad that that primary care physician chimed in and said, “well, it's really not your job as an ophthalmologist to give them any resources or do more with them.” And this original doctor kept chiming in and saying, “No, I really do try to support patients.” It was just one tweet, you know, we don't know what he's really doing. So maybe he is, you know, talking to them more.

What about your experience? In my experience with those other doctors, right, not the endocrinologist, the eye doctor, the dentist, even the pediatrician with Benny, they have no idea what diabetes takes. That's okay. It's not their specialty. I don't mind that. They don't know. I mind when they try to tell us more than they know. Right? Like, I had an eye doctor once Tell me, Benny was not in the room, he asked, “how long has he been diagnosed?” 12 years. I think at that time. “Well, you know, 20 years is when the complication starts showing up in the eyes.”

And I actually said out loud because I'm a pain in the ass patient. And I said, Really? What was the last time you actually read anything in a medical book about diabetes? I tried to be nice, I said it kind of nicer than that. But it's it really, when did you learn about type 1 diabetes? And he said in medical school, and I said, and when was that, right 25 years ago? And really, when were those studies done? Right? If you're looking at a study from 25 years ago, that study probably followed people living with diabetes who had been diagnosed at least 10, if not 20 years before that. So your data is kind of outdated. And we know if you're a longtime listener of the show, you know, from studies like the EDIC trial, and many others, that eye complications, along with many other complications are way down and almost non existent for people with diabetes, who have access to good care and insulin. I mean, we know there's a whole other world out there, but we know these complications when care is given our way down.

And whenever I talk about complications, I always want to say complications can happen even with the best care with diabetes. I mean, look at life - complications can happen with anything. So we try to do the best. We can see just other factors, you know, genetics, environmental, what have you. But with eyes in particular, I've talked to two endocrinologists in the past year, who say when they see a patient with any kind of eye issue under the age of 40, with Type 1 diabetes, they call everybody who's nearby, because they never see it. They want everybody to come in and identify it and look at it and see what the poor patient, but see what it really is all about, because they never see it anymore.

So my little conversation with that eye doctor, hopefully made him rethink a little bit about how he talks to other people with diabetes. I've had the same conversation with my pediatricians when I feel like educating because sometimes it is absolutely exhausting. And I had to back away from the Twitter thread because of that, that it is exhausting to keep educating and educating. You don't know everything about type 1 diabetes, you're not a specialist. Thank you for pointing this out. But what can we do about it? What's the point? Why would you say you're going to be in trouble? I'm going to give you a wake up call. I'm going to scare you straight. Why would you say all those things Thinking the outcome is going to be positive?

If you're aware of a study that talks about these things, and I was pilloried on Twitter for suggesting there could be a study, what would the control group look like? people who never get good health information, people who are never shown their bad eyes, or that they're going to lose a limb or blah, blah, blah, right? No, look, I don't create scientific studies. But you don't have to be a genius here. But why couldn't you something really short, that just gives you a taste of what we're talking about here?

Do a six month study, right? Pick an age group to a six month study your 25 year olds with Type 1 diabetes, everybody gets the same exams, but your feedback is - you're doing terrible. You have to be nervous. We're scaring you straight, kiddo. It's a wake up call. Now go get better.

And the other one is, Hey, I really feel like we could do more together. Well, how can I support you? What are the challenges you're seeing that are creating these issues with Type 1 diabetes, there may not be anything I can do to help but I understand that you're probably doing the best you can because type one is really difficult.

And then the other one, the third part of the study would People who are told here are your test results. See you next, right with no emotional kind of feedback. Why couldn't you do a quick study of that and see what happens in just six months? My guess is you would see really interesting results.

So better minds than me, thank goodness picked up on this and actually put it in a presentation at ATTD, at the international conference for advanced technologies and treatments for diabetes. This is the conference that I just talked to Kevin Sayer. That episode just aired a couple days ago. This is where he was in Madrid, Spain. So this is a huge international conference and this Twitter thread made it to a presentation, which shocked me. What shouldn't have shocked me is who was doing the presentation. This was the hashtag talk about complications presentation by Renza Scibilia and grumpy pumper Chris, who we've had them both on the show separately to talk about this and other issues. But this talk about complications slide that made its way to the presentation showed the original a tweet from the doctor, the ophthalmologist comedian, and they actually blacked out his name, which I didn't do here, because Twitter is public. And they showed the original tweet, you know, very effective wake up call. And then they put another tweet next to it. And I think that this is a hope that physicians might consider saying this instead.

So let me read you the original tweet again. And then the one that they suggest. So the original tweet, “Why are diabetic eye exams are so important? I can take a 28 year old with an A1C of 14 show her a  picture of a normal retina, then a picture of her diseased retina then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.”

Here's an alternative to saying that “Diabetes is really tough, and you're managing as you can right now. Thank you for coming to see me eye screening is really important. We know having a higher A1C increases the risk of diabetes related conditions. Let's work together to try to reduce the risks.”

Now I know some of you and maybe hopefully if you got your physician or not Doctor or dentist or somebody else to listen to this episode, it might sound very, you know, Kumbaya and woo woo. And, you know, let's work together. But I'm telling you, as the mom of a kid with type one, as a person who sees doctors for her own conditions, it is so much more helpful to hear this than to hear the other scary, effective wake up call.

I mean, you know, when I go to my doctor, and I say, I'm really upset, I've been trying hard and gaining weight, you know, what I don't want to hear is “You're really fat. And we know that being obese can help lead to health complications, and higher increase of cancer. Because you know, you really want to watch out what happens, you have this risk and your family and blah, blah, blah. So just stop eating desserts.”

What would be really helpful is, “Yeah, boy, it's really tough. I can see that your whole life, you've been a healthy weight. You're an active person who knows how to eat well. What's changed in your life in the last couple of years? How old are you? What is your metabolism doing? Let's sit down and talk about how things are changing maybe so that you can find a plan that might help you change”

I mean, I just came up with that at the spur the moment, but it's so much different to here. Let me help you. And let's figure out what you can do to make this better rather than let me blame you and shame you and scare you. A lot of people tune that out. And if they're scared, they don't want to do anything to make it better because they lose hope. I really hope that some healthcare professionals who saw this on Twitter took a moment to stop and think about it. I know a lot of them responded. And remember kind of insulting frankly, calling the diabetes advocates, trolls and one person called the bats. I don't know if that's a UK thing, or I don't know what that was all about. And there were some people who got kind of nasty, as I said earlier, but I really hope that people who saw this conversation, maybe had a different conversation with the next patient that came into their office, maybe a person with diabetes, who saw the conversation had the words now to tell one of their health care providers. Look, this isn't helping me. I need you to speak to me in this way. Which is really, really hard to do.

I will say before I let you go here that a lot of the physicians piped in with Well, my patients never react poorly when I give them this news, they all seem to appreciate it. Do the doctors not know that we talk to them differently than other people? Do doctors not know that some people like get dressed up to go to the doctor will really make sure that they are well groomed. I mean, it sounds silly, but you know exactly what I'm talking about. Right? doctors don't realize that we go to our cars. And as Melissa said, in that tweet, sometimes we cry, we call the friend and say you won't believe what happened to me. Or some people will tell a nurse things that they won't tell a doctor or they'll tell the front receptionist and they'll get the anger and so the doctor, people don't tell their doctor unless you're me and you're a pain in the butt.

Very few people tell their doctor, hey, you're wrong. Or I don't like this. Or even Can we try something different? People don't talk back to doctors. And the fact that they don't know this… Come on, guys. You got to be better. You got to think about it.

What do you think my way off base here? Were you part of that? Twitter chat, did it make you mad? Did it make you think? Let me know. You can always email me Stacey at Diabetes Connections. com. I'll put this in our Facebook group as well Diabetes Connections of the group on Facebook. I'd love to keep the conversation going. If you're a physician who has listened to this long oh my gosh, thank you so much. I cannot tell you how much we appreciate it when you take a moment to consider the other side of the stethoscope for lack of a better word. Let's keep this conversation going.

Of course, if you think I'm wrong, I am the world's worst diabetes mom, I can live with that. And you can find out much more at the website diabetes dash connections.com. Please subscribe to the show on any podcast app or just keep listening through social media or however you found us. We appreciate that we're not going to tell you where to listen. We just hope you keep on tuning in. I'm Stacey Simms, and I'll see you back here next week.

 

Unknown Speaker  15:57

Diabetes Connections is a production of social Stacey Simms media All rights reserved all wrongs avenged

 

Transcribed by https://otter.ai