Thursday, June 03, 2010

Why Anger Plays A Critical Role In Diabetes Self-Care

The other day, Chris Bishop (Type 1 Tidbits) wrote a very compelling blog post called "Diabetic Superheroes" (see here) which I think was really well said. The simple reality is that anyone who deals with a chronic condition is a superhero, and deserves to be recognized as such, especially since it's such a thank-less job.

A number of people (including many medical professionals) make bold claims that anger should have no role to play in managing a chronic disease like diabetes. Some of these individuals suggest that acceptance is or should be a key component to effective, ongoing self-care. I can't tell you how many diabetes educators who cling to this belief, because over the years, I've met simply too many to even try to recount here.

David Mendosa, whose great work I admire tremendously, recently posted about this very subject, with a story featuring a provocative title "Are You A Noncompliant Diabetic?" (see here). While I agree 100% with David's well-written article about "Incorrect Diabetes Terms" (see here), I still take issue with the contention that getting angry is as unproductive as calling patients noncompliant or diabetic.

David cites a new study in the medical journal Hormones and Behavior, that shows that when people get angry, their heart rates and arterial tension increases along with other psychobiological changes. Those may very well be accurate facts, but I still believe that healthy anger can lead to some very productive outcomes, and for some people, may actually play a vital role in effective self-care.

In fact, healthy anger can mean we have a whole lot more personal power and energy to help solve problems (which is needed on a daily basis to effectively manage a rapidly-morphing disease like type 1 diabetes, where insulin dosages defy the rules at almost every turn). The key is to acknowledge that anger is a healthy and natural emotion, and then learn to channel that emotion and use it in healthy and productive ways.

Personally, I think the minute I "accepted" diabetes into my life was also the same moment that my diabetes management went into the toilet because I viewed it as so permanent. To me, diabetes acceptance = defeat. By accepting diabetes as a permanent part of life, I had little energy or even willingness to stay on top of it, and my health was impacted. When I accepted and welcomed diabetes as a part of who I was, my self-care (and my HbA1c) was much, much worse than it is today. I would argue that anger about the diabetes was a far more effective self-care motivator, and continues to be many years later. In fact, my care did not improve until I completely rejected the idea of accepting and welcoming diabetes into my life. It was only after I channeled my anger and rejection of diabetes into self-care, as well as into fundraising and advocacy, that I achieved better significantly better results. So for those of you who claim that we need to "accept" diabetes, I have always said NO WAY.

Fight against it, diabetes should always be treated as an unwelcome guest in your body and in your family, and it does not belong there! Use that anger for a worthy purpose, instead.

Sure, some CDEs and doctors will point to yet another study of the obvious and ask what evidence I have that anger plays a role in effective self-care. I think my HbA1c's speak for themselves, both before and after my outright rejection of the idea of diabetes acceptance. But for those pin-heads that ask for clinical data to back my assertions up, let me refer you to one of my earliest blog postings, nearly 5 years ago (September 29, 2005) in which I cited a then recent study that showed medical research spending had doubled, yet all of this research had yielded mostly disappointing results. My personal experience proves that anger can indeed play a critical role in diabetes self-management (as it should), so I don't need more validation than that. In fact, we can and should argue that acceptance might actually have the opposite effect on good self-care behavior -- when that anger is channeled properly.

I think one way that "anger" can effectively help deal with diabetes is best demonstrated by the birth of a not-so-little nonprofit organization now known as The Juvenile Diabetes Research Foundation (JDRF), whose very roots were born in anger, not acceptance. That emotion has helped turn millions of frustrated parents and family members into a fundraising and lobbying dynamo (see here for an interesting presentation on the role of advocacy for JDRF), and that organization has arguably done far more to alter the course of diabetes research prioritization than a much longer-established diabetes organization like the American Diabetes Association has. In effect, parents' and patients' anger has been effectively channeled into an organization whose goal is not to maintain the status quo of treating diabetes in perpetuity, but to eradicate this disease completely, and put themselves out of business.

In the words of Lee Ducat, one of JDRF's founders in 1970 and the first President of the organization: "When you have children with an incurable disease, you have an insatiable appetite to do anything and everything you possibly can to help them, and that's why I started this Foundation. I'm optimistic that a cure is going to be found and the Juvenile Diabetes Foundation can go out of business."

Of course, that promise has yet to be fulfilled, but if it weren't for the JDRF, we would be much further away than we are today, and I think the evidence speaks for itself as far as advances are concerned. And anger, I think, played a key role in that. In fact, one could argue that MORE anger about type 2 diabetes could actually go a long way towards changing the research priorities for that form of the disease, possibly advancing cure-related efforts there at a faster pace than we have seen to date. We need look no further than looking at how AIDS activists like Act Up which was the very definition of a patient political advocacy, turned the paradigm on it's head. In 2004, The Wall Street Journal wrote "Not since AIDS advocates stormed scientific meetings in the 80's has a patient group done more to set the agenda of medical research" (in reference to JDRF). That same anger also needs to be unleashed against type 2 diabetes, or I fear we're likely to see just more of the same (which frankly, isn't working very well) for a long time to come.

For me, anger with diabetes is what motivates me to fight so hard against it, and therefore manage this disease as well as humanly possible given the relatively rudimentary tools we have to do the job. But that anger is also what keeps me motivated to continue fighting against it, by fundraising and sharing these views with others. Above all else, I think it's time to finally recognize the tremendous value that anger actually does bring to the equation.

By the way, to catch some of the comments made at my duplicate of this post over at TuDiabetes.org, please visit here!

8 comments:

Khürt Williams said...

Scott, this was a thoughtful article. I agree that anger is a natural and healthy emotion for anyone with or without diabetes. Understanding the fear behind the anger - I subscribe to Yoda's philosophy - is key to the insight about what you really want.

However, I disagree with you about "acceptance". I think resignation, not acceptance, is what leads most people down the path of poor health management.

Michael Hoskins said...

As usual Scott, incredible insightful and thought-provoking post. Once again, I stop by for a quick read before work and realize that the depth of your writing just doesn't allow a quick read and go, or even a quick comment.... Mind working, again...

Anyhow, I'd echo the sentiment that anger can be productive if harnessed into action and productive energy. Not sure if I totaly agree with "acceptance = defeat" aspect, though I do agree it can be defeating to battle a lifelong condition. I accept and recognize that it's a part of me, and in order to achieve what I want out of this life, I must manage my health well. I use the anger in not having a cure and realizing that it's lifelong to advocate. Honestly, denial coupled with hope makes my D-Management go down the tubes - when I don't admit that it's a part of my life and must be managed constantly, or that it doesn't mater now because there's a chance for a cure or that I might not develop complications. To me, that's the biggest challenge I've faced in the "acceptance v. denial" battle. Anyhow, great one to ponder! Thanks, Scott!

Cara said...

I like this. Acceptance is important, but not in a "laying down and taking it" kind of way. I accept that it's part of me, but I fight the battle that says diabetes will win. It may be part of me, but I'll fight to keep myself as healthy and productive as I can instead of just letting diabetes have it's way with my body and win the battle. If a cure doesn't come in my lifetime, I'll go down fighting.

Allison Blass said...

I agree, up to a point. For me, acceptance isn't the same as "liking" diabetes or being "happy" that I have it. Acceptance to me is understanding the fact that it is there and I can't do anything about it. I accept the fact that I have it, need to take insulin and check my blood sugar levels, and keep my A1C as low as I can. Acceptance doesn't mean defeat (defeat against what?), it means understanding the predicament that I am in and doing what I need to do. Too often I see teens I work with who *don't* accept they have diabetes, and try to live life as if they don't have it. Because they are angry, they push diabetes away from them rather than accepting facts.

Anger is a powerful tool. I've been an advocate and educator for as long as I can remember, and I certainly appreciate the role anger plays. But to me, those two things are somewhat separate. I can be angry towards diabetes and fight against, while also accepting my current circumstances and doing what I need to do to prevent diabetes from damaging my life more than it already has.

Tristan said...

Anger is what drives change. I was an angry teenager, like Allison described, and my diabetes management was terrible. Now, I'm an adult who uses anger the way you described. My management is significantly better.

I don't think I fight against diabetes as much as I have a never give up, never surrender attitude regarding diabetes. I accept it as who I am and fight the fight to stay on top. Sometimes I fight too much and too hard and I get frustrated. I am trying to find a balance between good and bad diabetes anger.

This is a very interesting post. Thanks for making me think this morning!

Renata Porter said...

I understand your point, but I don't know that anger is something we as a family have going on. For us, it's more of a "I'll show you" type of attitude. Still tough and bravado.
The DiabeticDuo

The poor diabetic said...

While anger may work for you Scott, it is just something that is not in my nature and I believe when it comes to diabetes management you have to use what works for you. To me it happens to be fear, every time am on a high, I can literally see my organs melting away...lol and this keeps me motivated. It is not in my nature to be an angry person and I think there would be some leakage into other areas of my life. So to each his own I always say

Michael Barker said...

I was diagnosed a Ketosis Prone T2 diabetic. What? I was thin and athletic. I didn't get it at all. Later I find out that nearly 15% of diabetics of color have this. How is it I didn't know about this? I am and was seriously pissed.
This anger spurred me to try and publicize this and push to get this thing understood. This anger may help others some day.

Glad I found your blog.