Is diabetes driving you Crazy?

Is diabetes driving you Crazy If so, welcome to the club in fact a very large club. 


The Bitter truth is that living with diabetes means sometime dealing with discouragement aggravation and despair.

Overcoming the emotional stresses of diabetes may be one of the most important steps you can take to manage the illness successfully.

Meal plan manage blood sugar levels, or integrate diabetes into the family can never be carried out perfectly. In his commitment to people with diabetes, Bill speaks out truth that living with diabetes means sometime dealing with discouragement aggravation, and despair in the first chapter to the last, he encourages the reader realistic rather than perfectionistic. And he support is breakaway approach both with research and with touching, sometimes humorous stories, voices of the many individuals with diabetes whom he has helped am particularly pleased that a consistent theme throughout Diabetes Burnout is that families matter Through the stories of Warren, Robert, and Sarah, Bill states the delicate balance between support and supervision in families living with diabetes. He clarifies how family members can learn to be constructively involved in diabetes management and to keep caring from becoming criticizing am enthusiastic about this book for patients and the families, as well as for the professionals who care for them.

 Diabetes Burnout. What to Do When You Can't Take it. Anymore

 is an engaging book, written with wisdom, humor and thoughtfulness about navigating the potholes an bumps that are always along the journey of life with

diabètes Barbara. Anderson, PhD

Senior Psychologist, Joslin Dale, Center

Associate Professor Department of Psychiatry Harvard Medical Sch

Acknowledgments

While writing this book

I was fortunate to have the

generous support of many friends and colleagues. They

took the time to provide me with expert guidance, critical

feedback, and careful review of many of the chapters

My thanks to Ron Ray, Katie Davis, Linda Gonder

Frederick, Rich Jackson, Tom Conant, and Jim Warran

an also thankful for the warm and wise counsel have

received over the years from my esteemed colleagues in

the field of behavioral diabetes-including Barbara

Anderson, Richard Rubin, Dan Cox, and John Zrebee in truth, the most important contributors to this book

are the innumerable patients with diabetes who honored

me with their trust and with their stories. It has been a

great privilege to learn from you all Finally, I am most deeply indebted to Reegan Ray, who

aided me along in every stage of this process and continues

to guide and be supportive every day. Without the

Wisdom patience and love, this book would never have

happened. Thanks, Reeg

Introduction

Is diabetes driving you Crazy If so, welcome to the club in fact a very large club. It has been my honor and pleasure to meet many thousands of people with diabetes over the years, and almost all of them are battling in some Way or another with the illness. Some are infuriated with diabetes, some depressed. Others are frightened frustrated, guilt ridden, or in denial. Underlying all of these different emotions is something very important a common psychological struggle that I never quite knew how describe or explain-untill I met Howard, young man who had been living with type 1 diabetes most of his life. Howard had been at war with the disease years. In our very first meeting

about diabetes in clear and Sucks'

since his early teenage he summed up his feelings in a concise manner: "Diabetes Sucks” this is how most of my patients feel

overcoming the emotional stresses of diabetes may be one of the most important steps you can take to manage the illness successfully.

Unfortunately, it is too easy for both patients and doctors to neglect this personal side of the illness Like many others, Howard was suffering from diabetes binout. Burnout is what happens when you feel overwhelmed by diabetes and by the frustrating burden of diabetes self-care. People who have burned out realize that good diabetes care is important for their health, but they just don't have the motivation to do it. At a fundamental level, they are at war with their diabetes and they are losing

Are you battling with diabetes burnout any of the following sound familiar

Feeling overwhelmed and defeated by your diabetes. Feeling angry about diabetes, feeling frustrated by the self-care regimen, and/or having other strong, negative feelings about diabetes.

Feeling that diabetes is controlling (or trying to control) your life.

Worrying that you are not taking care of your diabetes

Well enough and yet feeling unable unmotivated, or unwilling to change.

Telling yourself that diabetes management is not important, that complications can't happen to you, and yet not being able to escape a sense of impending doom

Partially or fully "quitting your diabetes care, thinking about diabetes as little as possible, and telling yourself that living with high blood sugars is not a problem

Avoiding any and all diabetes-related tasks that might give you feedback about the consequences of your poor self-care (for example, blood glucose monitoring or doctor visits).

Feeling alone with your diabetes.

 Perhaps because you are feeling so ashamed about diabetes that you keep it a secret from everyone.

If one or more of these items that accurately describe you, more likely it’s that you have burned out on diabetes . You will see diabetes burnout is understandable but in the long term it is a destructive and deadly way of coping with diabetes. If you are feeling burned out there are three important things you need to know

1. You are not alone (diabetes burnout is quite common).

2. You are not a bad person (given the pressures and the disappointments associated with living with diabetes burnout is understandable).

3. Your situation is far from hopeless (burnout can be conquered).

This book has been written especially for you who are feeling burned out by diabetes and for those who love you, examines how the stresses of diabetes can build diabetes burnout occurs, and most importantly, burnout can be overcome. So let's get started

CHAPTER1

On the Road to Diabetes Burnout

From the outside diabetes looks like it should fairly easy

All you have to do is take your insulin and medications everyday at the right time and in the right amount, eat perfectly without ever cheating check your blood glucose regularly, and exercise frequently. Balance these tasks with each other that your blood glucose levels never get too low or high. And don't gain or lose-too much Weight. Stay vigilant at all time just in case something goes wrong Finally, remember you must continue to do this every day for the rest of your life with no vacation from Diabetes  WOW

Simple! My foot!

No matter what you do how much obsessive you are in taking care of your diabetes

, you can be certain that something will eventually go wrong. There will be crazy days when blood glucose levels rise dramatically for no apparent reason There will be frustrating days when you just can't stop eatng And there may be scary days when minor or major complications suddenly appear

Joan Williams Hoover is a well-known author in dia betes who first developed the concept of diabetes burnout

| She describes how diabetes requires a lot of personal decisions every day. Most importantly

even the constant need for decision might be tolerable  if only the results were predictable Few things generate burnout like the awful frustration of having followed instructions and done everything just right and still be failing to get the diabetes into control, At those times it seems no use to continue to try Think how discouraging it is to fail at something you really wanted to do. Then consider what it must be like to have diabetes and be failing at something never ever, wanted to do in the first place.

Given all of the work, responsibility, decisions, and at least occasional disappointment, it is remarkable anyone is able to manage diabetes successfully year after year. There are some people who do. However, for many others, the frustrations of diabetes can become overwhelming, leading to feelings of helplessness depression or even worse. Let's meet some of these folks

MEL’S STORY

demanded manage his diabetes very carefully, but heneverea any hep They insiste ha "γου

earnotaea Εγγους εί During his high school as Me began fee more and more irritated and

PERSONA SDE OF. DABETES

burdened by the demands diabetes especially because he wanted to fit in with his schoolmates. He. fought more and more frequently with parents. And he began to feel that there was just no good reason to go along with their demands for better self-care.

Since high school, he had mostly ignored his diabetes though he had always take his insulin regularly. He had never followed any type of meal plan. And he tended to eat large amounts of chocolate and other sweets everyday. He checked his blood glucose about once every month o so ("Why bother checking more it’s always high, he told me). And he almost never saw a doctor. None of his friends knew that he had diabetes, and Mel himself tried his best to think about it as little possible. Although he insisted that diabetes was indeed a big deal Mel had become increasingly worried about the possibility of long-term complications. And although he did not  like talking about it, Mel admitted that he had always been angry about his diabetes and that he had felt overwhelmed and defeated by the illness for many years.

LOSS STORY

Lois was a 54-year-old administrator for a school system

She had been diagnosed with type 2 diabetes when she was 48. Frightened by the possibility of long-term complications, she had always been anxious to manage her diabetes well. She told me that she was positively successful in the first month following diagnosis but she soon became overwhelmed and hospital dietitian had recommended a highly structured meal plan that required Lois to give up many other favorite foods. As the months were on this new wayo

noe is Following herde also red to begin a regular walking However, the demands job ગn made in difficult to follow. Despite Lois’s best efforts for Over few months, she was unable to lose weight and experienced several fightening episode mil genia low blood glucose) Not surprisingly, Lois's attempts at self-management as slowy deteriorated. By the time we met, she was COntinuing to take her oral medication faithfully each day. but she was checking her blood glucose only rarely. She was following her prescribed meal plan, but only through the daylight hours. By dinnertime, Lois would begin to binge on cookies and crackers, and this would continue checked until bedtime. She had not taken a brisk walk or done any serious exercise in years. Her husband and close friends were worried about her health and Were constantly pushing her to "try harder." But this had not been helpful. It had only increased her sense of isolation with diabetes. Lois tried not to think about the illness and avoided seeing her physician, who she feared would recommend that she begin taking insulin. When she did

Allow herself to think about diabetes, she was angry and frustrated with her self

REGINA's story

Regina was a 19-year-old college student As she described it to me. had been "at war with diabetes since she was diagnosed at age 12. Regina came from cold and violent home. Her parents were busy fighting with each other that there was little time available to help Regna manage her diabetes. He blood glucose control was very poor. She averged one or two admissions A) each year her doctor started her on both long acting ultralente and  before meal regular insulin reginma

not taken any ultralente over a year. And she only took regular insulin in

large amounts, every several days when  she suspected DKA was approaching

Regina glucose in several years. She was obeses  obessesed with loosing weight she was binging and  purging

which included multiple sepis and occasional VOmiting.

Regina felt ashamed about her behavior and frightened

that long-term complications would affect her soon. She was angry at her diabetes and her physicians

(whom she saw as blaming a depressed and hopeless and uncaring ) Regina but she feared that any attemt control would lead to ever greater weioght gain

a was anxious to change pt at better blood glucose ater weight gain.

SAM'S STORY

had been living with type 2 diabetes for 3 years Despite pleas from his family and physician Sansaw little reason to make any changes in his lifestyle for diabetes He did not mind taking his oral medications each day. However he saw no point in adjusting his eating or being less sedentary. Sam's blood glucose levels were consistently above 250 mg/dl., and his cholesterol and blood pressure were both dangerously high. But this did not see important to him

he explained it to me, "What's the difference,were all going to die anyway - sums wife. who was worried so about him. would argue on him constantly. She urged him a stop eating so many sweets to start exercising * to see his doctor more regularly. But none of this had any effect on Sam. Many years earlier sm had seen his father die from complications caused by Diabetes. He was certain that this was to be his fate as well. In his heart, Sam felt doomed by the illness. The diagnosis had been a death sentence. And Sam believed that there was nothing he could do to alter his own fate.

BURNOUT IS COMMON

There are many many people with stories similar to those of Mel, Lois, Regina, and Sam. They are male and female. young and old, new to diabetes and veterans of the disease. They are not bad stupid, or weak people. They are normal folks who are struggling with diabetes for under. standable reasons. And their struggles take many shapes. Many feel out of control and overwhelmed by their diabetes. They feel helpless that things can ever improve. Some feel alone with their diabetes. Others battle with denial never truly accepting the reality of diabetes in their lives. And what they all have in common is diabetes burnout

BURNOUT and poor self-care

Even though there has been such positive news over the last few years about the great benefit of good self-care, diabetes self-care seems to be growing worse and worse. Research evidence now clearly shows that blood glucose management and other healthy actions can dramatically

lower your risk of long-term complications. But, as can be seen from the statistics in the box "News about Diabetes Self-Care" many people are not taking advantage of themselves. This is not because they lack willpower or are stupid. Instead, the major culprit is diabetes burnout. why! Because burnout saps your motivation to take care of yourself. And not taking care of yourself can lead to long-term complications such as eye, kidney,or heart disease.

THE JOB OF DIABETES

Consider this analogy. Have you ever known anyone who had a frustrating job in which he or she worked harder and harder each day, yet it seemed that his or her actions didn't make any real difference For example, a nurse on a cancer ward works hard for the patients everyday. Despite her efforts and caring, she has not received a raise in many years, her supervisors and colleagues never congratulate her on the great work she is doing, and many of the patients continue to worsen and die. Over time, these stresses begin to take their toll. The nurse may end up feeling helpless, chronically overextended and depleted, inadequate, and guilty that she is somehow failing at her job. These are the core features of burnout Living with diabetes can be very similar kind of ob." especially if you begin to feel that the day-to-day effort needed to manage diabetes is too burdensome and frustrating and the results not good enough to make the effort worthwhile. Much like the nurse suffering from job burnout, the person with diabetes burnout may feel very mixed up about whether he wants to continue his “job."

News about Diabetes self-care

Here are statistics that may surprise you

4. Problems with blood glucose monitoring, 21% of patients with type 1 never Checked, Of those patients with type 2 41% never monitored őrincs depending on the study regularly take less than labetes using less insulin than the prescribed amount insulin. One new study also who were not using insulin, reported Suggests that with type monitored scribed Some patients take less than prescribed amount of the Insulin  surveys at the Joslin Diabetes Center and elir oral diabetes medications large clinics in California, my colleagues and found ha 21-25% of patients rarely or never followed they hated 體doctors recommendations for blood glucose He may hate diabetes and hates that it controls his life long in a recent nationwide survey, 12% of yet he knows that he can Վաit. He may even become

following recommen ents reported rarely oneve III or checking their blood glucose levels. with healthy eating 2. surveys, 10-24% of patients with diabetes 赠 that they rarely or never follow their health THE CHALLENGE or BURNOU am's dietary recommendations. survey, 22% of patients reported knowing Venet far too many people who that they were supposed to follow a certain meal plan, because of diabetes burnout have chosen to ignore their doctors advice.

but they felt that it was usually or always impossible diabetes for years or in some cases, decades. Tragically,

a well-known diabetes education POgram many have been hit hard by long-term complications S.

preoccupied with worry about diabetes time doing as little as possible

while at the same

In my own practice,

showed that the program greatly helped patients to eye disease kidney disease, heart disease, painful begin eating better and exercising more. However damage amputations, and more. The arriva o serious when contacted year later, most patients had complications is sometimes wake-up call for taking " nabis harge of one'sDiabetes management, but not always in national surveys, 38% of patients with Diabetes burnout is so powerful that it can essee labetes reported that they rarely or never follow in the face complications health care team's recommendations for regular However, diabetes burnet is novel good surveys of patients with diabetes, my news is that it can be defeated. At people who you colleagues and found that 37-43% of patients have met in this chapter-Mel Lois Regina, and Sam managed to exercise three have overcome burnout and have made peace with diabetes. They are successfully managing their blood glucose

levels. And they are living healthy and satisfying lives You can too

The Real Story about Motivation

in Diabetes. Recognizing and Overcoming Barriers

Why is diabetes self-care, so difficult for so many people. If you are struggling with unhealthy eating habits, a reluctance to monitor your blood glucose, or some other self-care problem, what is really keeping you from man aging your diabetes more successfully Many people, including a large number of healthcare providers, believe that the explanation is a lack of self-discipline, too little willpower, stupidity, or "denial." In other words they think you are just not trying hard enough But there is little scientific evidence to support these beliefs. People who are managing their diabetes poorly do not necessarily have a problem with self-discipline or willpower. And there is no evidence that people who do poorly with self-care are less frightened about long-term complications than anyone else. Indeed, our research has shown the opposite to be true. Those with the poor self-management are often more frightened about complications than those with better management

with better secret SYO accuse someone of "not

"not accepting their diabetes | but that is usually unfair and inaccurate. For

many people, the real reason for poor self-management is diabetes burnout

No one is not motivated

Instead of exercising  MRs Jones  does what

She has always done. Watch "Wheel of Fortune and “jeopardy," her favorite TV shows, instead

The important thing to note is neither you nor anyone else is in need of a "motivation transplant." Rather you need to understand the unique pressures. that make it hard for you to take care of diabetes.

2. There are many long of diabetes, but not Very every interesting decision th eat that lovely piece of

short-term consequences good") and then to a les consequences

term benefits to taking care many immediate ones. For at needs to be made ("Should I eat that chocolate cake?"), we think first about "That's going to taste really good existential -about long-term "If I keep eatings many sweets, I'm likely

to have higher blood glucose levels and this increases the risks for complications)

Unfortunately, the decisions most human beings make are more strongly influenced by their thoughts about short-term results than by their thoughts about long-term results In fact short-term  cOnsequences are so powerful that they can cause us

ou audies without ven real have se disease I., dhe nos important benefits aren’t immediately particular the prevent long-term *Օnplicas reasons there can mediative COnsequences or ignoring diabetes concerns ("This cake tastes terrific"). So it is easy to see how short-term influences

lead to a loss of interest in diabetes self-care ... No one feels motivated to do something if the seem to outweigh the benefits. There are cost and benefits pros and cons, for every possible diabetes self-care tion, whether it be eating healthfully checking your Blood glucose, or making time for exercise. You make self are decisions often without knowing it-on the basis our beliefs about those costs and benefits. If it seen you that the benefits clearly outweigh the costs, Managing diabetes were relatively easy.However, if you see diabetes areas being such a burden that it outweighs the potential benefits, then it may seem completely reasonable try and ignore your diabetes. So diabetes burnout is more likely to occur when you believe the costs of taking good care of diabetes outweigh any possible benefits.

Even if you know that there are several powerful benefits to taking good care of diabetes, the barriers to good self management can often seen enormous. It is important to take a good, hard look at the benefits of and the barriers to effective diabetes care

THE BENEFITS OF GOOD CARE

The two major benefits of effective diabetes management are a positive impact on long-term complications: a healthier and more vibrant life for the future

If you lower you blood

glucose levels as the possibility that longTerm complications will develop And even a relatively small improvement in average blood glucose levels toward the normal range can have enormous influence long-term Perfection is not necessary. Even a small inprovements

lead to significant health benefits In the short-term high blood glucose levels make you feel tired, irritable and moody. You may have frequent skin infections, and wounds may heal slowly or not at all. The evidence is clear that when you can lower high blood sugars remarkable changes begin to occur rapidly. People report more energy, better mood and even better sleep. An additional benefit is that betteer blood glucose management means fewer visits to the emergency room and fewer hospital stays. So if good diabetes care can dramatically improve the quality of your life both now and in the future

it would seen reasonable to conclude that it must be worth the time and effort to manage diabetes as carefully as possible

But Knowledge is Not Enough

In 1992, the results from the Diabetes Control and Complications Trial (DCCT) were announced.

This study presented the first conclusive evidence that  a careful management of blood glucose has strikingly beneficial effects. Many of the major American diabetes centers believed that their clinics would new with patients demanding the help and guidance needed achieve good diabetes management. To prepare