The Health Coach Hustle

Note: Beta Cell is an audio podcast and includes emotion that is not reflected in text. Transcripts are generated by human transcribers and may contain errors. Please check the corresponding audio before quoting.

This is Beta Cell, a show about people living with type one diabetes. I'm Craig Stubing.

While we've talked a lot about access to insulin, but there's also a huge lack of diabetes education. And I don't mean that there isn't information out there. You have enough books, blogs, vlogs, podcasts, magazines, TikToks, Ouiji Boards, and just about everything else you can imagine about diabetes management that you could fill a library. The problem is that when someone is diagnosed with type one diabetes in the U.S., they walk away with a prescription for insulin, a free glucose meter, and an appointment three months in the future for 30 minutes with an endocrinologist, and they're expected to just figure it out on their own. And the problem with that is that, well, you just really can't. You're getting someone who essentially loses an organ that they probably didn't even know what it did, and then they're expected to manually replicate all of these vital life or death functions. And we think that a Wikipedia article is going to get them through it. Our health education is so bad that it makes the U.S. healthcare system look functional by comparison.

So armed with their insulin prescription and a free glucose meter, people newly diagnosed have to figure out how to keep themselves alive, pretty much all on their own. And that's when they end up at this library of diabetes knowledge. And with all this wealth of information, it's hard to know what advice you should trust.

Olivia: I kind of knew in the back of my head that oh, this is probably a mistake.

This is Olivia, that's not her real name. She asked that we change it. She was diagnosed with type one in her early teens and her insurance coverage wouldn't cover enough insulin and supplies, and eventually she started to develop kidney disease, which luckily she's been able to reverse since. So Olivia felt that she needed to get a better understanding of managing diabetes so that she could prevent complications in the future.

Olivia: It just seemed like a good investments at the time.

Olivia started seeing ads for diabetes health coaches on Instagram. You've probably seen these too. They're well-produced giving just the right amount of idealistic lifestyle with down earth. relatability, promising you a better life if you just invest in yourself. Just what Olivia was looking for.

Olivia: I thought to myself that this was going to be one of the few things that I'm going to take a splurge on. And if I had to like pay it off as time went on then, um, so, so be it.

Craig: How expensive was the program you signed up for?

Olivia: It was about $3,500 and I got the cheapest option.

Craig: Did you feel like they were qualified teachers?

Olivia: Uh, not really. Now that I think of it, I don't really know what the program like coaches' like certifications were other than being diabetic themselves. Which, I mean, there's a lot to it. I think that a lot of the things that, we pick up on comes from other diabetics. But it's not like the coaches themselves are giving us super in depth tips that you would expect for that much of a cost.

Craig: It almost seems like they spend more time on the marketing than the actual education.

Olivia: That's a fair statement. Yeah, I guess that's just the main point, that I don't want others to make a potentially costly mistake. And granted, you know, maybe these types of programs might work for them, but I just don't think it's necessary to put yourself in that situation just to get like a card stock certificate some like three months later.

Today on the show, we're looking into diabetes education. What are the options out there? How do you find someone you can trust and how to avoid a costly mistake.

You can't talk about diabetes education without mentioning one of the experts, Gary Scheiner. His book, think like a pancreas is essentially the Bible of Diabetes Management. It explains how insulin works within our bodies, so we can figure out the best way to manage our unique selves. And he understands that because he has the perspective of not only living with type one diabetes himself for 36 years, but from seeing patients at his clinic since 1995.

Gary: I'm on my 29th different insulin pump. And we use every CGM, every closed loop system, used Afrezza. We try all the medications that come out. We're sort of Guinea pigs in that regard. But, you know, we figure if we're going to be teaching patients about it, we want to have personal experience and be able to lend that to the discussion.

Gary is a Certified Diabetes Care and Education Specialist, which is the new terminology for what used to be called a Certified Diabetes Educator, or CDE, which I'm going to use in this episode, since it's a lot less letters. Now when I was diagnosed at 13 years old, I saw an endocrinologist who poked my feet to make sure that I could still feel them, went over my lab work and all that medical stuff. But after he left the exam room, a CDE would come in and look at how I'd been doing the last three months and help me figure out how to actually manage my diabetes better.

Gary: We're the diabetes specialists. Endocrinologists have more medical training, but they don't have more diabetes training than we do. We have exclusively diabetes training. That's our focus. And even though we're not the ones typically writing the prescriptions for the medications and the devices, we're the ones who make the suggestions about what to use and we're the ones coaching them on how to utilize them effectively. So we're kind of in the trenches with the patient, helping them manage best and live successfully with this disease.

As you can probably tell CDEs are really the gold standard for diabetes education, but only one out of 10 people with diabetes ever see a CDE. And a lot of diabetics don't even see an endocrinologist, the specialists of the endocrine system, which insulin is a part of. Most people just see a general practitioner who has a general knowledge of diabetes, but is definitely not an expert on all the different insulins and devices out there, like Gary is.

But even if you are lucky enough to see a CDE, diabetes is still hard. Since you have to manage your blood sugars 24/7 and balance all the different factors that can impact blood sugars, many of which we don't really have control of, just having the right device or knowing the right amount of insulin to that take for a meal, might not even be enough. There's this constant burden on the patient to figure out how to fit diabetes into their lives. Oftentimes medical teams seem to place more emphasis on diabetes management than life management. And again, since the patient is the one managing this every minute of the day, if there isn't a sustainable balance between diabetes and life, one can get burned out really quick.

Lissie: Not only were my educators not even looking into those other areas, like what's causing my body stress or what's my work life balance. What is my movement look like? It just was black and white. There were saying, you know, take this dose each and every day.

Lissie Poyner is an integrated health coach and personal trainer who has had type one diabetes for eight years. Now, you'll notice that I didn't say that Lissie was a CDE, that's because she isn't. But for over a decade, the health and wellness coaching industry has been growing. It's a way to help people figure out how to implement the treatments that their medical team is giving them into their own individual lives.

Lissie: But I actually ended up moving home. And that's when I really saw these big shifts in my health. Because I did feel safe in my environment. I did feel safe in my relationships. I felt closer to my family. I felt more aligned in my career. And I've noticed that with my clients too, when they get to focus on those areas and they allow that to coexist with their diabetes management, that's where they really see a lot of shifts in their relationship with diabetes, the relationship with the number, the relationship and trust in their body.

Leigh-Ann: What health and wellness coaching is is client driven, client centered behavior change.

This is Leigh-Ann Webster, she's the executive director for the National Board for Health and Wellness Coaching, NBHWC for short. Now anyone can really call themselves a health and wellness coach since it's not licensed the same way your doctor, or even a CDE is. But in 2012, the NBHWC was founded in order to provide training and education standards for the industry.

Leigh-Ann: A health and wellness coach is really somebody who can partner with their client and walk beside them as that client is trying to make changes that will improve their health and wellbeing. And so really it would be talking with that client, talking through their day, talking through their goals, their aspirations, what they're driven by, what they're motivated by, so that they, as the expert in their own life, eventually can get to that real reason why they want to make the change. And the real solution that will work for them and their life.

We know that everyone is different, so why would we expect diabetes management to be the same for each person? We know that we take different amounts of insulin. We have different exercise routines. We have different work schedules. Some of us have pets to walk or kids to take the soccer practice. Obviously the way we incorporate diabetes management into our varying lives would necessitate different strategies. But there are limits to what advice a health and wellness coach is able to give.

Leigh-Ann: Say, well, your physician suggested that you need 25 to 35 grams of fiber a day. Let's take a look at some foods that are really high in fiber and how you can incorporate those into your diet. So like I'm not prescribing something, but I'm helping them better understand whatever it is they need to understand to reach optimal health. Creating a partnership between the client and the physician and the health and wellness coach.

Health and wellness coaches were never meant to be a replacement for your physician, especially if you're someone with a medical condition like diabetes.

Leigh-Ann: Health and wellness coaches, they are tested on basic healthy lifestyle information, right. Basic cholesterol numbers, basic blood pressure numbers. However, they should not be giving specific recommendations regarding like insulin management. If they are, then they are going out of their scope of practice.

Lissie: I decided if I want to integrate the diabetes perspective in this, I need to get somebody who's actually qualified to speak on the diabetes side.

This is Lissie talking about her diabetes coaching program, Needles and Spoons.

Lissie: So I did partner with, she's my co-coach still to this day, she's a registered dietician and CDE. Because I just think that that's a perspective that people have to have on their team or working with them when you're approaching a thing like diabetes. We know that there are things in the background, like basal rates, carb ratios, correction factors, and just because you're a person living with diabetes and you might understand and conceptualize those things doesn't mean that you can be giving advice on that.

Craig: Is that experience of knowing how to treat your diabetes from yourself enough to treat someone else?

Gary: Usually it is not.

This is Gary again.

Gary: Because you developed some opinions about what works for you and what doesn't work for you and go out and try to apply that to everybody, that's not going to work. So, for example, if I used a certain insulin pump and that's all I recommended to people, I would be remiss in my duties in terms of coaching patients, because it's not appropriate for everybody to use the same thing.

And the same can be said for nutrition approaches. Um, you know, Dr. Bernstein's probably a good example of this. You know, he had a tremendously positive experience on a very low carb diet. For him it worked well, so now he teaches it to everybody. But we all know that's not appropriate for everybody. And it's very important to customize things to the individual. So just having individual personal experience doesn't often lend itself to being a good diabetes educator.

Are you noticing a trend here?

Gary: There's nothing that requires more individualization and customization than type one diabetes care.

Thanks for the assist, Gary. If you don't take anything else away from this episode, just remember this diabetes, all types of diabetes, is completely personal. You can not simply design a program to manage diabetes on a mass scale and expect it to work. Whether you're looking at the amount of insulin someone takes, the devices they use, a diet. You simply cannot treat two people with diabetes the same. Not just because our bodies are different, but because our lives are different.

So with all of this in mind and knowing what kind of advice a health and wellness coach is legally able to give, we're going to step into this diabetes library of knowledge ourselves by delving into the same health coaching course that Olivia did at the beginning of the show. And just a warning before we go any further, we're going to mention eating disorders in this next story. We don't get into the specifics, but if that's something you'd rather not hear, you can skip ahead nine minutes.

Sam: I'm Sam Graham. I've had diabetes for 27 years. At times in my life, particularly in my early twenties, I definitely had an eating disorder. eating disorder. Now I would call it more disordered eating. But like, it, it does go hand in hand with type one, not for everybody, but for a lot. And it's just like, I'll always have disordered eating because there's no way I can not obsessively think about food, right? Like how many carbs are in what I eat? How much fat? Like you can't not think about it. Like I need to do that to live.

Sam has had good blood sugar control for over a decade. But as we've already heard, there's a lot more to diabetes than just managing your blood sugar, even if you're doing it well, it doesn't mean you're living well.

Sam: So I actually just like proactively Googled. I was like, maybe I can find like a diabetic life coach or a therapist to sort of help address this like mindset piece around like food and eating. It just really destroyed me mentally and emotionally. And like I needed someone who could understand that and who could help me sort of like set that right.

So that was earlier this year, maybe in like, I don't know, March or April and, you know, Lauren Bongiorno's website came up sort of high in Google search and lots of testimonials and things like that you would look for when you're trying to figure out if someone is legit and it seemed like a dream come true, to be honest, like I didn't even know something like that could exist.

Lauren Bongiorno is probably the most prolific diabetes health coach out there. She was diagnosed with type one diabetes when she was seven years old, but it was in college that she says she started to struggle with obsessive diabetes management, leading her to do things like eat low carb, exercise nonstop, and restrict activities and foods that didn't align with her idea of control. But after finding yoga, she realized that conquering diabetes, that's her phrase, would only happen if she found balance in her life. She started teaching yoga, fitness, and nutrition, and even became an ambassador for Lululemon and a Podvocate, not my word, for the Omnipod insulin pump. In 2015, she started Lauren Bongiorno diabetes coaching, which last year was rebranded to Risely Health.

This is a bit of a sidetrack, but stay with me. So back in 2018, over at Type One Run, we wanted to launch a couch to 5k program to help people with type one who had never run before feel comfortable starting it in a safe way. We wanted strength, workouts to go along with the running, so we reached out to Lauren because of her fitness expertise. And I can say that it was frankly a great experience. She created workouts and even recorded videos so people could follow along if they didn't know how to do them.

But back to Lauren's health coaching business. Lauren is not a prescribing physician. So she can't give clients adjustments to their insulin. She's not a CDE either, or a dietician or therapist. Risely Health does have an advisory board consisting of a psychologist, a territory business manager for Omnipod, a registered nurse slash CDE, and a registered dietician slash CDE. Now none of these people on the advisory board actually consult with the clients, they just advise Lauren and her team. And as far as the other three people on her team is concerned, they all have type one diabetes. Two of them are national board certified health and wellness coaches. And one is working towards that. And as people who are both type one and board certified, we know that they have an appreciation for not only how individualized type one care needs to be in order to be effective, but they understand the scope of advice that they are legally and ethically allowed to give.

Sam: So initially I had wanted to invest in a one-to-one coaching program to get like, sort of really tailored support for this specific issues I was feeling. I had spoken to Lauren Bongiorno's like intake coordinator co coach, and was ultimately ultimately convinced that this decide and conquer bootcamp would be a better trajectory for me. And so I went with that, it did an add on for like three one-on-one coaching sessions. And I think that was around $4,000. And I work in tech, like a $4,000 is not nothing, but like I afford that so like, cool, whatever let's do it.

At the time, I think I felt a little bit pressured, but sort of was like, okay, like, we're all just trying to do our business, hard sometimes when like health is your business. So like, I get being a little bit pushy or whatever. Looking back on it, it was actually pretty wild.

The Decide and Conquer bootcamp is a 12 week group coaching program for 40 women at a time. A pretty big group. The program consists of prerecorded videos and PDFs that clients watch or read on their own. And then they come together once a week for a live zoom meeting with the coaches and other participants to go over those materials. You're also able to connect with the coaches in between these zoom meetings.

Sam: You know, I was pretty honest and, I think as I recall anyway, pretty detailed about like the struggles that I had, particularly around like disordered eating, things like that. And, you know, kind of was like, on the call, look, is this like stuff you can help with. Is this stuff you've seen. And you know, it was sort of promised, yes, yes, we have a whole session or like a whole week dedicated to like, eating and things like that. But it was basically just about how exercise and weight correlate, which is like, sort of a causation doesn't equal correlation thing, right? Like I'm actually like super active, but between type one diabetes, and I also have PCOS, like weight is just really hard for me. Some of the times I've been most active in my life, I've honestly weighed more. So, you know, that's not like super helpful. And it's also really a backwards way of thinking about like nutrition and your body it actually felt like a little bit harmful because not only was like, not relevant to my experience and like pretty off base, but it's like a narrative that like is probably a little bit dangerous.

Craig: Did you feel like they were overselling to you, how they were going to be able to help you?

Sam: Again, I was like pretty forthright about what it was that I was looking for. And, like if they had said look this seems like beyond the scope of our ability, but here are some resources or like, have you considered X, Y, or Z like. But like, even if it was just a, no look like we can't help you with this, that's an answer, right. But what I got was, no, you should absolutely sign up for this. We have sessions that cover this kind of stuff. And like, don't worry, like it's going to be great. Give us your credit card. Which is like a totally different thing, right?

Craig: In your mind, was, was this structured in a way that they could get money to coach you, but avoid any legal issues by actually treating you?

Sam: I went into really hopeful that they could help me with disordered eating and all manner of things like diabetes related, but fully knowing that this coaching team, they're not licensed therapists, they're not mental health professionals. Knowing there'd be some limitations, but maybe hoping there would be some sort of like best practices from people who had kind of experienced this stuff, right. Like some kind of like compassion and like, hey here's how I got through it, right. Not professional medical advice, but some support.

It is a hairy area though with like the sort of legality and like coach versus medical professional thing. And I'm not sure if the advice that was given was necessarily with that consideration, like, we don't want to give any medical advice. I think one example that I can think of and I may be getting it only partially right, so take it with a grain of salt. But like part of the program includes sleep basal testing. So like doing some fasting and like seeing what your basal rates look like. And one person who was super newly diagnosed, they had just started a pump like fairly recently. And her endocrinologist basically said don't turn control IQ off. Like, we need to like, sort of figure this out together. And Lauren or one of the coaches was like more or less the gist of it was like, no, you should turn it off and do basal testing.

And like, admittedly, my doctor does not always know what's best for me, but like also if you're worried sort of about the legality and like, any ramifications of giving like medical advice, like telling someone their doctor is maybe not right, is probably venturing into that territory.

This wasn't the only legally questionable thing that I've heard about Lauren Bongiorno's coaching programs. I was sent a screenshot from one of her clients where she told them to change their insulin to carb ratios. And if you remember,

Leigh-Ann: They should not be giving specific recommendations regarding like insulin management.

So that seems pretty straightforward. Right? So what did I say legally questionable? Technically only the doctor who prescribes your insulin can tell you how much of it to take. But we know diabetes is very unpredictable and we're changing our insulin dosing all the time. It's not as simple as just taking one pill every 24 hours with a meal. And it's not uncommon to sit down from another person with type one at lunch and ask, what would you bolus for this? Is that illegal medical advice? Yeah, technically it is. But I think when you're asking a friend how much insulin to take for a 10 piece chicken McNugget meal at McDonald's, no one is looking at that as medical advice. It's a little different when you're paying $4,000 for a coaching program that says on the website, that it will give you quote, a clear roadmap for improving bloodsugar. It's not really client-centered behavior change when instead of giving them information to make that behavior change, you just tell them how much insulin to give.

And there's more too. One of Lauren's products, the seven day blood sugar reset, which is not a coaching program, but a guide you can purchase includes a section on which foods to eat and which ones to limit or avoid. Those are things like chicken, gluten, cheese, and maple syrup. I'm a little offended. Not only because that's most of my own diet, but because I think that restricting foods, the same thing that Lauren said she was doing when she was obsessing about her diabetes, is pretty far out of scope for someone who is not a registered dietician. And also when dealing with people who have type one diabetes, who are twice as likely to experience an eating disorder as the rest of the population, I'd argue it's concerning, if not downright dangerous.

Craig: Do you feel like through the process, whether or not their outcomes, we're good. Do you feel like the team had the best of intentions at all times?

Sam: I don't know that the intentions were actually that good. Like the feedback was not taken well. It was sort of put back on me. In one call I had complained about burnout and I was like at an all time low in terms of burnout, just from pandemic, work, everything. And was basically told like, kind of until I can like deal with my own stuff, like, I'm never going to get what supposed to get out of this course. Right. Like, and it's like, okay, well, why am I getting coaching?

Your diabetes is like, it's a part of you, but it's sometimes very much the most vulnerable part of you. And I think, There's never been a magic pill for diabetes or for like any aspect of it really. And like seeing something that's a solution, like I'm not trying to say it's intentionally exploited, but it does like exploit a very vulnerable part of your sort of like psyche. I don't know. and so questions that I would normally ask in different contexts, literally any other context, for some reason did not feel like they applied.

Certainly there are people within my cohort from that bootcamp who found tremendous value in it. So I'm not saying like it's total BS or like nobody should it. I think it depends on what you're looking for and certainly on whether you have the resources to kind of like flip the bill for that kind of thing. For me it was pretty disastrous, but you know, I mean, like who am I to take away from somebody else who said it was like one of the best things I've ever done for themselves?

Craig: Besides all these negative things, was there anything positive that came out of this?

Sam: Yeah, absolutely. I've made some really lovely friends. It's really hard to put a price on that, but like, I don't regret spending the money to like, sort of get me to where I've gotten today in that regard. It's been tremendously fulfilling, but in terms of like what I took away from the program, I asked for a refund or like a partial refund, cause like I just didn't even want to finish the one-to-one coaching sessions. I found them complete waste of time.

Craig: And you know, $4,000 is a lot to pay for that, but you know, maybe, maybe not, in the grand scheme of things.

Sam: Yeah. $4,000 is objectively a lot of money for pretty much anybody, but for me, like on a relative basis, like it was an amount that I could stomach and like I'm not in deep pain over the financial loss. The emotional sort of loss of like having invested a lot of time and energy and hope in something that ultimately out to be kind of a sham, to put it kind of not so delicately is, is a harder thing to stomach. But you know, at end of the day, knowing that I spent $4,000 and got some really nice friends out of it, like in a really, you know, a good sort of entryway to the like diabetes online community, actually like feels kind of worth it to me. I hope for other people there's a more direct path to that. That doesn't involve them signing up for a course that may or may not work for them. But at the end of the day, I'd say that aspect of it certainly is a net positive.

Sam's experience with Lauren Bongiorno's coaching program is not an isolated experience, but it's also not the only one. Many people rave about Lauren and her programs. And you can see those testimonials on her website, just like Sam did. But it seems that in this case, pushy and maybe deceptive business practices, led Sam to sign up for a $4,000 program that didn't help her, which is not great. And this program hardly sounds like the individualized client-centered health coaching that you would expect from someone with NBHWC certification. Anecdotes like telling a client to change their insulin pump, change their insulin to carb ratios, and saying what foods they should avoid are legally questionable and ethically, at least in my mind, wrong.

I reached out to Lauren Bongiorno and Risely Health multiple times for comment. I did not hear back.

It's clear that managing all the aspects of living with type one diabetes is pretty overwhelming, but we've gone through a lot of the different types of people out there who can help you tackle this all encompassing disease. Diabetes is personal, so everyone's journey to a healthy relationship with their diabetes is going to be different. I asked Gary, if you have someone who has just been diagnosed or even someone who has had diabetes for a while, but just wants to get it under better control, what advice would you give?

Gary: It's okay to not be perfect with your diabetes. What you're looking for is improvement. And, you know, set goals that are modest and achievable and be realistic about it. What you said about being overwhelmed. It's very common because there's so many aspects of our day-to-day lives that affect our diabetes management. That, if we try to tackle all of those, we're doomed to fail. So it really helps to set small manageable goals, work on one little thing at a time and set yourself up for success. We're not looking for perfection. We're looking for improvement.

If you're struggling with diabulimia, you can contact the 24 7 diabulimia helpline at 425-985-3635. And if you're not in the U.S. Find them online@diabulimiahelpline.org.

Beta Cell is produced, recorded and edited by me, Craig Stubing. And our theme music is by Purple Glitter. You can follow us on Twitter, Instagram, and Facebook @betacellpodcast. If you're looking for improvement in your diabetes management, there are a few places you can start. You can find a licensed CDE at cbdce.org and you can find a certified health and wellness coach at NBHWC. Gary's practice is at integrateddiabetes.com. There you can sign up for his free newsletter and you can buy Think Like A Pancreas wherever books are sold. Lizzie is@needlesandspoons.com. I just told you a lot of links, so if you didn't get them, you can find them in the show notes and at betacellpodcast.com.

If you liked this episode, please leave us a review on the Apple Podcast store. If you really liked this episode, please support us on Patreon.

I'm Craig Stubing and this is Beta Cell.