How Does Your Diabetes Educator Make You Feel?

Diabetes Educators

Despite my love and appreciation for the medical profession as a whole, I, like many people with diabetes, do not like diabetes educators. In fact, I don’t just not like them; I feel openly hostile toward them. Nearly every interaction I’ve had with a certified diabetes educator (CDE) has left me feeling judged and condescended to, no matter how well my actual diabetes care was going at the time.

I feel bad about these sentiments, because most CDEs are very nice people. They’re so nice, in fact, that they have devoted their careers to trying to help other people, deliberately entering a field that nearly guarantees that they will be overworked and underpaid. In reward for their efforts, they are often faced with patients who don’t listen, don’t act on their suggestions, take out their anger on them, or – this definitely applies to me – express skepticism at everything they say. It’s amazing anyone signs up!

Given this mutual frustration and mistrust, I was very excited by a talk I attended at this month’s American Association of Diabetes Educators (AADE) conference in Philadelphia. Titled “Making Shifts Happen: From Drama to Empowered Conversation,” it suggested a powerful new approach that might change this dynamic for patients and diabetes educators alike.

The two speakers were Paige Reddan, MS, RD, CDE, who’s been living with Type 1 since 1993, and David Emerald Wolmeldorff, who has Type 2 diabetes and is the author of the book The Power of TED (The Empowerment Dynamic), on which the talk was based. 

In a nutshell, the point of the talk – and the TED approach to diabetes – is to redefine the role each person plays in relationship to diabetes. In most situations, explained Wolmeldorff, a patient and CDE are two players in what he calls “the dreaded drama triangle” (a play on the Karpman drama triangle). This triangle consists of three interconnected roles: the victim (in this case the person with diabetes), the persecutor (diabetes itself) and the rescuer (the diabetes educator).

Intuitively, this makes sense: diabetes is the persecutor victimizing the person with diabetes, and the educator (or any diabetes-related professional) is there to “rescue” the victim by providing expert help and support that only they are qualified to provide. But the problem is that this desire to help the victim – well intentioned though it might be – can actually perpetrate the person’s sense of victimhood.

While diabetes can certainly feel like an unwanted persecutor, viewing yourself as a victim of diabetes is very disempowering and stressful. Part of the definition of being a victim, after all, is not being in control; not being in control means that you don’t have the power to proactively change the situation. And being powerless provokes anxiety. 

In this situation, diabetes becomes something to be feared, a problem that you just want to go away. And while the diabetes educator may truly want to “rescue” you from this, in reality, by perpetrating this anxiety and sense of victimhood, they’re often just enabling the cycle. As Wolmeldorff explained, when you feel anxious about something, you often will take action to get rid of that anxiety. But when the anxiety goes away, you may revert to your previous behaviors. In the case of diabetes, where your previous behaviors may have been causing the anxiety, reverting to those behaviors will make your anxiety spike again – perhaps with a touch of guilt thrown in at your perceived lack of willpower or self control (perceptions that the CDE may inadvertently – or advertently – reinforce as well). So you take action, your anxiety goes down, you stop taking that action, and it returns again. You feel guilty, stressed, and even more like a victim. It’s an emotional version of yo-yo dieting.

Instead, Wolmeldorff and Reddin offered an alternative triangle, which he calls TED: “The Empowerment Dynamic.” In this situation, the diabetes educator is no longer the rescuer, but the coach. Diabetes itself is no longer the persecutor, but the challenge. And the person with diabetes is not a victim, but a creator.

What this means in practice is that instead of being driven by anxiety caused by a perceived problem, the person with diabetes defines what he or she actually wants  – a shift in perception that makes it much more likely for he or she to maintain a change in behavior. Think about it: the point of fixing a problem is to make it go away. The point of working toward a goal is to bring the goal closer.

Here’s a sample scenario of how this might play out: whereas a “rescuer” CDE might perpetrate anxiety in the patient by saying, “You really need to get your numbers under control – do you know about the risks of amputation?” a coach-oriented CDE might say something like, “What are some of your goals for your health?” or “What changes do you wish you could make?” — or even just, “What can I help you with today?”

The patient might need some encouragement – indeed, most of us are used to being treated as victims, not creators. But if you keep asking open-ended questions, we’ll likely be able to come up with something. It doesn’t even need to be specific — even something as broad as “I want to feel healthier” can provide a great entry point.

In that case, a coach-oriented CDE could say something like, “That’s great that you want to feel healthier. What is one small thing you could do tomorrow to help you work toward that goal?” Maybe it’s taking a 10-minute walk after dinner. Maybe it’s only eating half of dessert. Whatever it is should be concrete, clearly defined, achievable, and – while brainstorming together is a great idea — ultimately decided upon by the patient herself.

In this model, anxiety is replaced by a positive goal, and the patient has a self-defined path to get there, baby-step at a time. The next time the CDE and the patient meets, the coach CDE would try to praise whatever steps the patient had made toward the goal and help the patient brainstorm next steps. Instead of criticizing failures, the point is to create attainable, patient-defined goals – and recognize patients for their efforts in achieving them.

This may sound gimmicky, but if you have any doubt to its value, think of the last time you had a frustrating experience with a CDE – or any diabetes health care professional, for that matter. What if, instead of starting your appointment by poring over your glucometer’s numbers and circling highs and lows (i.e. starting with perceived problems first), they simply sat down and asked you what you wanted to talk about or work on that day? What if, instead of feeling ashamed and judged by a CDE – and annoyed since they are not the one personally living with your version of the disease – you felt supported, encouraged and actually listened to?

If this all sounds obvious to you then, first, I hope you will consider a career as a certified diabetes educator and, second, I wish you’d been at the question-and-answer session. The room was packed with CDEs, people who not only had made career choices to help people with diabetes, but were attending a conference to learn more about how to help people with diabetes, and had deliberately chosen a session targeted toward helping them help people with diabetes. In other words: they really want to help!

And yet as I listened to the questions from the audience – and chatted with some CDEs afterwards – I realized how often even the best-intentioned CDEs inadvertently perpetrate the so-called dreaded drama triangle with their patients. They told stories of how frustrated they felt when they repeatedly warned patients of the complications that would ensue if the patient didn’t follow their suggestions. (This is completely understandable from their perspective – who wants to have a patient lose their foot? – but also very anxiety provoking and victimizing for the patient.) They explained how they started appointments by looking over their patients’ numbers, circling highs and lows with a pen (presumably to identify areas to work on, but completely forgetting to acknowledge all the effort all the “good” numbers took to achieve). They might say things like, “You really need to lose some weight,” or “You should really be on insulin” – both of which might be true, but both of which phrasings come across as accusatory, scary and shaming — and assume that the educator, not the patient, has all the answers. When I suggested to one (very nice, very compassionate) CDE that she might begin appointments simply by asking her patients what they’d like to talk about that day, she actually took notes. (Note: this is an excellent self-esteem boost, though I do realize the irony of taking on the “rescuer” role myself.)

For more information, I recommend checking out Wolmeldorff’s book – The Power of TED. And if you have a negative experience with a CDE or medical professional, instead of fuming silently or spending the evening thinking about all the clever things you could have said (my preferred response), consider bringing up this approach with them yourself. Most CDEs genuinely want to improve their patients’ lives. Maybe, rather than criticizing them, we should empower them instead.

 

Catherine Price is the author of 101 Places Not To See Before You Die (101worstplaces.com).  She writes the blog The Reluctant Diabetic. For more from Catherine visit Catherine-Price.com.

Follow Catherine on twitter (@catherine_price)
 

 

 

Comments (10)

  1. kate at

    Thank you for this article. I have never felt like a victim of diabetes; I have chosen to see it as a source of inspiration and empowerment (really!).

    The only time I have ever felt depressed was after engaging the services of a diabetes education organization (There are no T1 CDEs where I live). I allowed myself to be vulnerable and to openly express my deepest fears about T1. The counselor could not get off the phone fast enough once I started to cry. I have never felt more abandoned, humiliated, and duped in my life. I kept waiting for the counselor and nutritionist to contact me as stated in the costly 6-month contract I paid for, but it never happened – this just intensified my feelings of humiliation and sadness.. 

    Now: no CDE and no emotional turmoil.

    Thanks for your post.         

  2. Salli A at

    The first DE I had when I was diagnosed by Kaiser Permanente made me feel like I couldn’t believe a word she said, as she was grossly obese and a very poor example of someone promoting a ‘healthful lifestyle’.  Really? Practice what you preach, Kaiser!  Help your Health Educators get healthy so we whom are not can trust what they say.  She preached a good sermon, but it fell on deaf ears because I could not get past the contradiction of what my eyes were seeing and what my ears were hearing.

  3. hmbalison at

    I have a great CDE who reads your blog and is the one who told me to starting reading it. I think one of the reasons we have had a positive relationship is that she has been a coach to me. She and I have worked together, and she is encouraging. After reading this post and hearing about your experiences, I feel really lucky.

    One time, I expressed fear about being at a high risk for stroke. She and I went through my numbers and she and I walked through the known risk factors and where I actually stood in relation to those numbers, and my stroke risk was actually very small. This is just an example of “dealing with reality” approach to diabetes.

    Thanks for helping me articulate why I do appreciate my CDE. 

    Alison (from Half Moon Bay–just in case my CDE reads this!) 

  4. Catherine at

    Thanks for the comments (and Alison, your CDE sounds fantastic — and I’m really touched she directed you toward my blog). To all the CDEs out there who might read this piece, I hope it doesn’t come across as overly critical; I’m just very curious about why I’ve had such a negative reaction to my own experiences. I think the more we can do to improve the relationship — and communication — between CDEs and patients, the better. 

  5. June S. at

    That was an excellent blog post! I have actually only ever encountered two CDE’s in my 41 years with T1 diabetes. I met one when I attended an AADE conference many years ago, and I ended up rooming with her. I recall that, near bedtime, my BG was low, and I had snacked, and re-tested, and was still low. I apologized for making any noise while I snacked again (and then brushed my teeth again!) The next morning she thanked me, and said the experience had given her new insight as to what it is really like to live with T1 diabetes. The second encounter occurred more recently, during a hospital stay. The CDE “volunteered” her services, knowing that I probably didn’t need them. I explained to this CDE why I liked to bolus BEFORE a meal. She said she usually advises patients to bolus afterwards, in case they haven’t eaten as much as they thought they would. Everyone’s body, I realize, is different than the next person’s, even if they have T1 diabetes. Everyone’s personality is a bit different, too, and life circumstances, etc., etc. I like the approach of a CDE just opening up a dialogue, rather than starting with BG numbers and logs, etc., etc.

  6. Leslie at

    My only experience with a CDE has been extremely positive. More than anyone, she has encouraged me and (though I hate this word) empowered me to take care of myself. She’s not judgmental. She’s compassionate. And she’s totally up on the latest research about D — in fact, she’s fascinated by it. Many people in her family have it, and she went into the field to make a difference. I have come to think of her not as my CDE, but as my good friend, someone who gets me, never judges, only helps. She’s been a faithful guide (really a team mate) through a scary, mucky time and I’m so grateful. I’m a T1, on MDI, and with her help over the past year, I’ve taken my A1C from an 8.6 to a 6.1. And yet, if it all swung the other way and next month my A1C was a 9.6, I know she’d never censure: together we’d just roll up our sleeves together, and get back to work. How cool is that? Kudos, Lora (if you’re reading).

  7. Catherine, thank you so much for sharing this! I have always had to work hard to stay on top of things with my Type 1. Last year, I was told about a CDE who is also a Type 1, so I thought “Great, finally someone who won’t just lecture me!” Boy, was I wrong! I left in tears! 
    I was just starting my coaching practice and that’s what influenced me to specialize and I became a Diabetes Coach myself. I don’t play the “shame and blame game” with people. I also work to train medical staff on communication but most importantly, listening skills! These skills should be commonplace, but since clinically trained folks come from such a “I know best” culture, they are just not encouraged to be encouraging.
    Thank you for helping spread the word that that *IS* something supportive and helpful out there! I hope everyone has a wonderful experience with their medical team but if not,  look for Diabetes Coaches in you area or online.
    Thanks for spreading the word! 
    -Leann 

  8. Nat at

    I get the gimmicky bit!  It’s a bit daggy, but it helps me manage if I play goal type games in my own head.  I wrote recently about this at http://intrepidtalesoninsulin.wordpress.com/2013/08/15/clocking-pac-man/ 
    I also tend to think of me as being the project manager of my health.  Health professionals are consultants who work for me, so they need to support my approach that I set out.

  9. Catherine! I totally know how you feel EXCEPT when it comes to working with Gary Scheiner, CDE who lives with type 1 himself. There is no judgement or condescending bullshit because he totally understands what life with diabetes is like. Check it out at http://www.integrateddiabetes.com — he works with people via Skype/Phone across the globe. Worth every penny for your diabetes glitches and troubles. 

  10. Sunny at

    Nat, that is a great way of looking at it! I just wish HCP’s saw us as the manager and them the hired consultants! Salli although I see where it is important to have a CDE you trust and is healthy, it seems to me like you may be doing a lot of judging yourself that may be unhelpful. I am a CDE and I am far from the visual picture of health. I am Type 1 with an eating disorder and many mental health problems. Looking at me, you might judge me and not hear me out. But guess what? I am the most non-judging person you will meet. I understand each patient has goals that are different, and should be guiding care. The thing is, I may not look like I “practice what I preach,” but in fact, I do. I preach forgiving yourself, not punishing yourself because you are not perfect, doing the best you can given the situation you are in, not becoming a victim or victimizing yourself, getting back up when you fall off the horse, and treating yourself well. I also preach that this idea (that comes from both the HCP and the PWDs side) that everyone has to be “perfect” and either fails or succeeds (i.e. A1c 9, fail, A1c 6, pass) is missing the whole point of life. I am far from perfect. I relapse, I treat myself like crap, I sometimes don’t want to live. And yet, I go to therapy, I take the medications I need, and when I slip and fall, I keep working towards getting back up again. I am not perfect, and I don’t pretend to be, and I don’t expect others to be. This is why I feel I am a good CDE, or at least have the potential to be.

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