People with diabetes who are newly starting insulin may have concerns and fears, many of which are caused by beliefs about insulin that may not be accurate. Susan Guzman, PhD, joined The Huddle to talk about the potential fears that may come up when someone is starting insulin, and how diabetes care and education specialists can address these fears and provide support so that people feel comfortable and informed when taking insulin. This episode was made possible with support from Lilly, A Medicine Company.
People with diabetes who are newly starting insulin may have concerns and fears, many of which are caused by beliefs about insulin that may not be accurate. Susan Guzman, PhD, joined The Huddle to talk about the potential fears that may come up when someone is starting insulin, and how diabetes care and education specialists can address these fears and provide support so that people feel comfortable and informed when taking insulin.
This episode was made possible with support from Lilly, A Medicine Company.
Jodi Lavin-Tompkins
Hello and welcome to ADCES' podcast, The Huddle: Conversations with the diabetes care team. In each episode, we speak with guests from around the diabetes care space to bring you perspectives, issues and updates that elevate your role, inform your practice and ignite your passion. I'm Jodi Lavin-Tompkins, the Director of Accreditation and Content Development at the Association of Diabetes Care & Education Specialists. And I would like to thank Lilly for their support for this podcast.
My guest today is Dr. Susan Guzman, a clinical psychologist and director of clinical education at the Behavioral Diabetes Institute in San Diego, California. We're going to have a conversation about “psychological insulin resistance”, which generally means how to address people's fears and concerns about starting insulin.
Susan Guzman
So nice to be here with you, Jodi.
Jodi
Well, before we jump into the topic, could you tell the audience a bit more about yourself and your background as it relates to today's topic?
Susan
Sure. As you mentioned, I'm a diabetes psychologist and both in clinical practice and research, very engaged with people with all types of diabetes, type 2 and type 1 diabetes, and their family members. And I have been with the Behavioral Diabetes Institute, now we just had our 20th anniversary. And so I don't have diabetes myself, but I care about hundreds and hundreds of people who do. And I'm passionate about people feeling engaged and empowered to manage their diabetes effectively and according to what's important to them so that they can find new ways to help diabetes fit into their life, but also live a long and healthy life with diabetes.
Jodi
And that's awesome. We really appreciate people like you who help others. So, we're here to talk about insulin. And so I want to explore, what are the most common reasons that people are reluctant to start it? And what are the barriers that you're seeing?
Susan
Well, I think we have to kind of back up and talk about what are the problematic beliefs about medication in general around diabetes, because I think in addition to that, there's the beliefs around insulin that kind of pile on. So one of the problematic beliefs about the role of medication is a lot of times we have competing goals. Like a lot of people with diabetes, and it's kind of surprising when we ask this even to our folks with type 1 diabetes, the goals are to be on less or no medication. And health care professionals are focused on being on the amount of medication that is required to get your numbers at target. And so we often have these competing priorities, but we don't address these concerns that people have about medication. So, sometimes just not wanting to be on medication in general is a big problem in diabetes management. So that's one of them.
Another one is diabetes fatalism, which is very common especially in type 2 diabetes, which means that you think that you're doomed no matter how hard you try. And so if you think that, why would you bother with all this stuff? You know, additional medications or starting on insulin or making behavior changes are all of the many, many things that are being asked of people to modify or eliminate altogether to manage their diabetes effectively. So that diabetes fatalism is a big problem. If you think you're doomed, why would you bother? So I think that really making sure that we're offering messages of hope around that issue are especially important because diabetes fatalism is widespread. Another very common belief is sort of treatment skepticism. Like you might think that medications are bad for you, or they may be causing more damage than they do good. And that shows up a lot in diabetes, but especially with insulin therapy that they think maybe, you know, insulin is bad for me or, you know, that some of those scary side effects like hypoglycemia, that might be not worth the trouble that it causes. And then as we get into more insulin-related beliefs, a lot of people don't really understand the benefits versus the risks and don't really understand why it's effective or if it's even necessary. Many are worried that their quality of life will be considerably impacted, that they don't feel confident or have self-advocacy around adjusting their dosing. They're perhaps worried about unwanted side effects like weight gain or hypoglycemia. They may be worried about injection pain. There's a lot of common fears that this means that their health is worsening. Like “if I start on insulin, it means my diabetes is getting worse”. There's quote unquote more severe. Sometimes feel like people will fear that once they start on insulin, they would never be able to get off of it. And then there's this underlying sense of personal failure or shame that often goes with needing insulin therapy.
In fact, in the stigma literature, we see that for people with type two diabetes, stigma is a lot lower until people are on multiple daily injections because then their diabetes is more public. And so they get a lot more comments from others about having diabetes. It's less hidden. And it often brings up a sense of personal failure. “Needing insulin means I've failed”. And we see this a lot in our own programs when we work with people with type 2 diabetes, that they feel like needing insulin means they've failed at making effective behavior changes or weight loss or other self-management behaviors. And then their concern perhaps is going to interfere with their work or social life. And sometimes they worry that actually it's insulin that causes harm such as blindness or amputations. Often this comes from relatives that when insulin was often used or started as a time of more advanced diabetes and people were developing complications and started on insulin at that time. And so then people often believed it was insulin causing complications rather than, elevated blood glucose for long periods of time. And so there's a lot of actually really good reasons, important concerns that people have about not wanting to start insulin.
Jodi
That is a long list that you just gave us. And I know those are all real concerns. I've heard some of them in my practice in the past. So, it would be great if you could share with our audience today what strategies we can employ to help people get through this.
Susan
Yeah, because there are some things that we've learned from the research that actually really work. And part of how we learned that is by looking at when people were prescribed insulin and had initially declined it. And then, over a period of time, eventually started it. What happened for those people versus those who declined it and never started it? And we learned a lot from those people. And one of the most important things we learned was it wasn't addressing all those things first that actually mattered most. It was: was insulin therapy self-management training provided? Did they show people, demonstrate and injection? Teach them about sight rotation and how to
titrate their dose, how to manage insulin in the real world, like, you know, about storing their insulin and, you know, proper injection technique. But just helping people feel confident that, especially in just that initial demonstration of an injection Because if you think about it, it makes a lot of sense. Most people's experience with needles are with immunizations, right? That's an intramuscular injection. Those needles are big and they do hurt.
But then when you see the tiny little needles that are how this one is injected as subcutaneous, people are often surprised, like, “oh my gosh, I can't believe how tiny that needle is”. And then when you're able to demonstrate either with saline or even just showing people how it's done, I know that there's other ways and very clever ways that people demonstrate an injection. But just that demonstration of an injection, even before having the conversation around beliefs, around your concerns, is one of the most powerful things that can happen. So, insulin self-management training provided is one of the biggest things. And then addressing concerns around injection pain or side effects as they put it, which usually means weight gain and hypoglycemia. How to address hypoglycemia, when and if it happens so people feel confident that they've got it. If it happens, they recognize the symptoms and they know what to do about it. And really helping people understand the risks and benefits and feeling confident that they can adjust their own dose. Those are the things that we've learned that really matte. And working collaboratively with the person so that you can help engage them with how they want to start it and titrating doses, all of that being done with a collaborative style, addressing concerns and validating those concerns can really matter. And then also dispelling insulin myths, for example, needing insulin does not mean that you failed, a really important one.
Jodi
Absolutely. So, you have expertise in really making people at ease with this topic. So what's the best way for us to do that? I mean, we are diabetes care and education specialists, and we offer self-management education. But, this is an important topic and we want to address it in a way that puts someone at ease. So how do we do that the best way?
Susan
I think that there's layers to this. It'd be important to mention insulin long before it's needed. So that, you know, in diabetes care and education classes, insulin is mentioned in an empowering way and normalized as just another tool that helps people stay safe with their diabetes and live long and healthy lives. So really sort of taking the stigma away from insulin therapy at just any conversations soon after diagnosis.
Jodi
You know, I used to work with an endocrinologist who asked us to have everybody give an injection at the first class before we did anything else just to kind of get that out of the way.
Susan
Yeah, I think that's great because I mean, it's novel. I can't say that I've heard that being done, but you know what? That would be the next thing that I would recommend would be: when it's time for insulin, for many people, know, long after that first conversation around diabetes, but for those, some maybe not, but to also recognize in conversation that not wanting to be on insulin is common and expected. Nobody goes, “yay, it’s time for insulin”, right? That reluctant individuals have good reasons. And the four sort of solid solutions that are based in research I would really encourage is what you just mentioned, Jodi, which is that encourage an immediate injection, because that takes the sort of a huge percentage of the fear away right away. Like, “aw geez, that wasn't so bad”. That doesn't mean that the beliefs aren't still there, but a huge amount of the fear can be addressed right away with just an immediate injection. And then we encourage what we call an insulin challenge, which means we're going to do a short-term trial of insulin, when it's time, of course. A short-term trial of insulin and then reassure the person that if it's something they can't do, they can't make fit into their life and absolutely hate it, you'll help them come off of it and work on a different treatment plan. And oftentimes when you do that, it gives people back the sense of like, “Oh, I get to make this choice”. It's like, this is still in the realm of choice. Like it's not being taken away from me. And it's amazing when people do this challenge or experiment with insulin and work on it, seeing how it matters in their own blood glucose management. Oftentimes people will say, “well, that's not nearly as bad as I thought it would be”.
Jodi
How long does it generally take for that experiment? How long would you give it?
Susan
I would say a couple of months because you want to be able to titrate. So that's kind one of the other mistakes that commonly happens when people start on insulin. We intentionally start on people at low doses, right? Because we don't want them lower than what they'll actually need. But if we start on too low of a dose and don't titrate up quickly enough, people will look at it go, “well, that didn't even help”. And we really don't want that. So we want to say, “we're going to start on a lower dose on purpose and we're going to titrate up so that you can see that this actually works”. Because again, people often don't even understand what insulin does, why they're being asked to do it, and what they're supposed to see. So if people bother with an injection and they don't see any impact, you could see why they would come to that belief. So over a couple of months where you have a chance to have people start on insulin and have a chance to titrate up to a therapeutic dose, and then if they say, “you know what, I can't do it or this is not for me”, to promise to work on other treatments that could help.
Jodi
Yeah, and thankfully there are other treatments…
Susan
Exactly.
Jodi
…To offer, or they may be willing to change something that they weren't before. You know, you just never know, right?
Susan
You never know. Exactly.
Jodi
And some people that need insulin, it's just because they have glucose toxicity and it's temporary anyway. So you're just using it to...
Susan
Yeah, to get them out of that danger zone and then other things might be more effective after that brief period of time.
Jodi
You know, I've used that tactic of doing experiments with lots of things in diabetes self-management, but I've never tried that with insulin. So I think that's a really good idea.
Susan
Well, it's something that we've seen that works and also the research supports because again, people are worried that, I even see this interestingly with CGM, Jodi. People will say, “well, if I start on that, I have to like, always use it”. It's like, no! If you start on it, that doesn't mean you have to do it forever if you hate it. But, you know, of course, with CGM it’s a little bit different because usually when people start on that, they love it. You know, the idea is, if you help people see that they don't have to marry into any of their treatment choices, they have the right, permission and should feel empowered to change their minds and change their treatment plan.
Jodi
Yeah, it's that having control over things and having autonomy to make choices, I think. It's the bottom line, right?
Susan
It is the bottom line. And all of that really, you what we've learned is that collaborative style of communication where we respect people and address their concerns rather than dismiss them. To recognize, you know, people do have good reasons. And one that I didn't bring up that's really relevant is the cost of insulin. We know that sometimes people will not want to change their dosing because of cost, even after they initiated it. And sometimes it's a barrier to stay on insulin. Rationing insulin is a real thing that happens in the real world.
Jodi
Right, something to think about.
Susan
Yeah.
Jodi
Well, this has been a great conversation, and you've provided us with a lot of great tips and insights. Do you have any more closing thoughts for the audience?
Susan
You know, the words that we use, the messages that we use, and how we talk about things can make a big impact. So to recognize that, you know, when you're talking about change in treatment plan, whatever it is, that we talk about needing changes to your treatment plan. It's just the natural process of getting older with diabetes. It doesn't mean you're worse or more severe or that you've failed. I can't say that strongly enough because often that's the conclusion that people come to is that they've failed and that they're “bad at diabetes”. And I think that that's a big part of how we can in empowering people with diabetes really pay attention to your messaging around the need for medication and especially insulin.
Jodi
Yeah, I used to say this is just replacing what your body needs. Your body doesn't make enough anymore, so we're just replacing what it needs.
Susan
Exactly.
Jodi
Well, thank you, Susan, for sharing your expertise and insights with us. It's been great to talk with you today. And again, I would like to acknowledge Lily's support for this podcast.
Susan
Thank you for having me.
Jodi
Well, thank you all for listening to this episode of The Huddle. The information in this podcast is for informational purposes only and may not be appropriate or applicable for your individual circumstances. This podcast does not provide medical or professional advice and is not a substitute for consultation with a health care professional. Please consult your health care professional for any medical questions.