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Disorders Associated with Diabetes Eating Disorders - Section 1 Diabetics with an eating disorder are 3 times more likely to have diabetic retinopathy.An Overview of Eating DisordersWhy should you know about eating disorders? If you, your child, or loved one has one of the many metabolic disorders that carry a medical demand of closely monitoring eating habits, there is a significant increase in the risk of developing an eating disorder. Eating disorders (EDs) are not just a problem for young girls; an all too common belief. EDs can develop at any age and also affect boys and men. In Australian type 1 diabetic children as young as 11 years old purposely under bolus insulin with meals in order to lose weight. In the United States studies suggest up to 25% of all females with diabetes – a prevalence of 2-6 times higher in women with diabetes than in the general population – have an eating disorder. The findings from a study by Flinders Medical Centre in Adelaide, also showed children in Australia with diabetes were markedly affected by disordered eating behavior:
While diabetes does not actually cause an eating disorder, having to pay close attention to weight management and food choices places an unnatural and unhealthy focus on eating and leads to distortion of self and body image. Once a person has ED issues, it is often easy for them to hide their problem under the guise of “it is part of my diabetes care plan.” Restricting, the elimination of certain foods or entire food groups, is a common factor in ED behavior, as is developing “safe” and “unsafe” food lists. A person may become overly concerned or anxious when offered something from their “restricted or unsafe list.” The initial limitation and focus of a food may stem from legitimate management issues (eating high glycemic index carbohydrates causes a rapid rise in blood sugars, fat prolongs highs) that develop into compulsive avoidance. Fear may also stem from weight gain which can happen with all forms of diabetes, and for diabetics, the body conscious, ultra-thin-is-desirable- culture we live in, is made even worse because diabetics are weighed at every visit and constantly reminded from a health standpoint about excess body weight and diabetes. And those with metabolic challenges, especially type 2 and pre-diabetes, hear the “thin message” from culture, health professionals, parents, and even their own still voice from within. In fact, many believe that diabetics are to blame for their onset and readily point the finger at a lifestyle out of control. Bulimia: The Feelings Disorder Bulimia is often referred to as a “feelings” or “emotional” disorder. That is, emotions may be deferred or dulled by overeating (bingeing), and “coped” with by subsequent purging. A sense of emotional and stress relief may be associated with the act of purging and a false sense of control is restored. However, the temporary release is just that, and feelings of negativity and loss of control return and the cycle continues. Bingeing - During a binge, one of the common factors is that people feel out of control, as if compelled or driven to eat. The person often feels intense anxiety and out of control prior to, and during the binge session. Binges usually consist of high carbohydrate or fatty foods, most typically sweets. Binges can occur over hours, but with bulimia "stuffing" is generally condensed into rapid, frantic eating over a short period of time almost always in secret. A sense of panic may set in, as well as guilt, during and after eating so the bulimic subsequently purges. Purging - Purging is defined by several behaviors including forced vomiting, excessive exercise to burn calories ingested, fasting, and excessive use of laxatives and enemas. Serious Complications Are Associated with Eating Disorders Eating disorders are serious business – even for the nondiabetic. More than 20% of all those with an ED will die from complications attributed to their unhealthy eating habits. This is not just true for anorexia nervosa (self-starvation) but for those with bulimia and binge eating disorders. All persons with EDs are prone to serious immediate and long-term health issues and even death. Blindness, kidney damage, neuropathy, impaired circulation are all concerns with any type of diabetes and these risks are extremely elevated in those with an ED. Even without adding diabetes into the mix, persons with EDs are also at risk for heart failure, rupture of the esophagus from forced vomiting which leads to almost certain death. Additionally, damage to the esophagus from repeated vomiting can cause serious injury, scarring, and even lead to esophageal cancer, an almost fatal condition. Ruptures can also occur in the stomach and intestinal tract from overeating and vomiting. Vomiting and misuse of laxatives can lead to life-threatening electrolyte imbalances than can cause heart failure. Binge eaters who do not purge are often obese and morbid obesity carries its own serious health risks. The physical implications of should be taken seriously, but so also should the emotional and psychological damage living with an ED brings. Social isolation is often self-imposed, and in some cases the ability to function in previously enjoyed activities becomes impossible. Most persons with EDs believe that they are the exception and will not suffer serious health consequences but this is not the case. All persons with EDs suffer both physically as well as psychological and emotionally. Many also fail to believe that they have a problem, or, that they are in control of their disordered eating. The fact is, the behaviors take over and control thought processes, which become all-consuming, and activities and social encounters will even begin to be structured around abnormal eating behaviors. Warning! Some persons with an ED will use syrup of epicac to induce vomiting. This is extremely dangerous and can lead to cardiac arrest. If you find hidden bottles of this over the counter medication get help for your child immediately. Insulin: Misuse Can Be Addictive Those using insulin therapies may refuse to bolus with food, or deliberately under bolus. High blood sugars are dangerous and have serious, even life-threatening consequences, but also result in weight loss – an obsession with almost all suffers of EDs. But the weight loss is due to body tissues, not just fat, being dissolved and excreted in urine. Sometimes, there is a temporary improvement in blood sugars when persons with diabetes fast. Prior to insulin therapy, fasting was actually one way patients were told to deal with their disease. When food, particularly carbohydrates are not eaten, less insulin is required. A person may think that they are actually “curing” or helping their diabetes because they require less insulin. The truth is not that they are getting better are requiring less insulin, but they are starving their bodies of both food and insulin. Of particular concern are persons with type 1 diabetes who have an absolute insulin deficit. Fasting is not beneficial to diabetics because it may lead to a reduction in levels of circulating insulin. The body needs circulating (basal, or background) insulin on a consistent, continual, daily basis. If a persons with type 1 stops taking insulin or reduces the amount needed, diabetic ketoacidosis (DKA) will quickly set in. Not only will DKA develop over a shorter period of time, but at lower glucose levels than if the person had been regularly taking insulin. (This is why pump users should never turn off their pumps at night. If sugars are low pumpers should increase their snack intake at bedtime rather than turn off their basals for the night – something I learned the hard way!) Diabetes Management vs. Eating Disorders: Much in Common Eating disorders and diabetes have some common characteristics so it is important to understand the dynamics of ED behavior. Both diabetes management and EDs go hand-in-hand with weight management, focusing on types and quantities of food ingested, and revolve around numbers and constant vigilance. Both diabetes and EDs have “good” and “bad” foods that a person will try to avoid, even fear. And just as persons with EDs become consumed with the numbers on the scale, diabetics must be highly focused on the scale and by the numbers on their glucose monitors. With both diabetes and EDs control is a constant issue and food a constant thought process to be planned and calculated and perhaps even to be executed rather than enjoyed. A person with diabetes must constantly attempt to control their disease so that it does not control them. A person with an ED believes they are in control of the habits, but eventually EDs control the person who will usually deny this, going so far as to even state it is their active choice to pursue unhealthy, disordered eating habits. How do you know if a person is simply exercising rigid control in their diabetes management or has an eating disorder? The connection between diabetes and the risk of EDs may be a result of both disorders sharing much in common. For example, diabetes and eating disorders both involve the idea of “forbidden” or “restricted” foods, and keen attention to diet. Both diabetics and those with EDs may become overly concerned or fixated on how food impacts their bodies. Diabetics may misuse insulin to control weight – a dangerous behavior that can lead to all the serious complications normally of concern with diabetes. Misuse of insulin can cause elevated blood glucose levels, affecting a persons A1c, as well as putting them at risk for diabetic ketoacidosis (DKA), and long term health problems including kidney failure, heart disease, blood circulation difficulties, neuropathy, damage to the eyes, blindness, and even death. Having diabetes often feels like the disease is controlling the person. Persons with EDs seek to regain control through modification of their weight or eating habits. However, the truth is that the ED soon takes over and the person is compelled, rather than choosing, to maintain unhealthy ED practices; something the person will deny deny deny, believing and stating that they can stop anytime they wish to. Since it can be difficult to detect an eating disorder (many with EDs go to great lengths to hide their problem), look for some of the following warning signs, especially in adolescents who may be in charge of their own care:
Additionally, many persons with EDs will binge and purge in secrecy and come up with excuses to fast when other people are around. They push their food around on their plate, may seem anxious, cut food into smaller and smaller pieces, or only eat one pea at a time. They may become highly defensive when confronted with weight or eating habit concerns. Bulimics tend to be at, or near-normal weight, anorexics are underweight, and binge eaters tend to be overweight. Both anorexics and bulimics can go through periods of fasting and bingeing, which is almost always followed by some form of purging. If you suspect someone you know may have an eating disorder you can also expect them to probably deny it. Diabetes Management vs. Eating Disorders: Much in Common Eating disorders and diabetes have some common characteristics so it is important to understand the dynamics of ED behavior. Both diabetes management and EDs require weight management, focusing on types and quantities of food ingested, and revolved around numbers and constant vigilance. Both diabetes and EDs have “good” and “bad” foods that a person will try to avoid, even fear. And just as persons with EDs become consumed with the numbers on the scale, diabetics must be highly focused on the scale by the numbers on their glucose monitors. With both diabetes and EDs control is a constant issue and food a constant thought process to be planned and calculated and perhaps even to be executed rather than enjoyed. A person with diabetes must constantly attempt to control their disease so that it does not control them. A person with an ED believes they are in control of the habits, but eventually EDs control the person but the person who will usually deny this and even state it is an active choice to pursue unhealthy, disordered eating habits. How do you know if a person is simply exercising rigid control in their diabetes management or has an eating disorder? The connection between diabetes and the risk of EDs may be a result of both disorders sharing much in common. For example, diabetes and eating disorders both involve the idea of “forbidden” or “restricted” foods, and keen attention to diet. Both diabetics and those with EDs may become overly concerned or fixated on how food impacts their bodies. Diabetics may misuse insulin to control weight – a dangerous behavior that can lead to all the serious complications normally of concern with diabetes. Misuse of insulin can cause elevated blood glucose levels, affecting a persons A1c, as well as putting them at risk for diabetic ketoacidosis (DKA), and long term health problems including kidney failure, heart disease, blood circulation difficulties, neuropathy, damage to the eyes, and even blindness. Diabetes often seems to feel like the disease is controlling the person. Persons with EDs seek to regain control through modification of their weight or eating habits. However, the truth is that the ED soon takes over and the person is compelled, rather than choosing, to maintain unhealthy ED practices; something the person will deny deny deny, believing and stating that they can stop anytime they wish to. Since it can be difficult to detect an eating disorder (many with EDs go to great lengths to hide their problem), look for some of the following warning signs, especially in adolescents who may be in charge of their own care: §
Secretive
eating, denying hunger, refusing to eat with others, Additionally, many persons with EDs will binge and purge in secrecy and come up with excuses to fast when other people are around. They push their food around on their plate, may seem anxious, cut food into smaller and smaller pieces, or only eat one pea at a time. They may become highly defensive when confronted with weight or eating habit concerns. Bulimics tend to be at, or near-normal weight, anorexics are underweight, and binge eaters tend to be overweight. Both anorexics and bulimics can go through periods of fasting and bingeing, which is almost always followed by some form of purging. If you suspect someone you know may have an eating disorder you can also expect them to probably deny it. Diagnostic Criteria for Anorexia Nervosa Anorexia is classified by several characteristics including being 15% or more under a normal body weight. Anorexics, which sometimes refer to themselves as “Annies,” are often perfectionists and people pleasers and may appear highly emotionally stable on the surface and are rarely seen as "problem" children. They may exercise frequently and eat very little food and are likely to misuse laxatives and enemas. At some point, women of childbearing age may stop menstruating and become hirsute (excessive growth and darkening of the hair, especially on the face). Brittle nails, from undernourishment may also be seen in those with anorexia. Diagnostic Criteria for Bulimia Bulimia is classified as being at a normal or near-normal body weight with periods of food binges usually, but not always, followed by some sort of purging activity. Bulimia is diagnosed when a person exhibits these behavior patterns two or more times a week over a 2-3 month period of time. Bulimic persons may refer to themselves as “Billies.” Note: Women with type 1 diabetes are more likely to suffer from bulimia than any other eat disorder. Some common traits seen in bulimia include:
Diagnostic Criteria for Binge Eating Binge eating is characterized by overeating in excessive, sometimes even dangerous quantities. The binge eater may or may not use purging activities and is typically overweight. Binge eating is almost always done in secret and may lead to elevated blood glucose levels even in nondiabetics. Note: Women with type 2 diabetes are more likely to suffer from binge eating disorders than from anorexia or bulimia. Some common traits in binge eating disorder are:
Control Issues: The Heart of the Matter It is important for parents of children with diabetes to be highly sensitive to the sudden loss of control children experience when diagnosed. This is not an imagined loss of control, but a literal one with life-threatening consequences for noncompliance. Children quickly understand that straying from the care path chosen for them can lead to parental anxiety, disappointment, and even anger. Almost overnight their entire world of choice is taken from them. Children, even from a very young age, are able to understand that to do things the wrong way with diabetes can kill them: control is essential. This is an adult burden even adults have trouble adjusting to. Children, while resilient, are not without the need to feel in control as well, but as much as they need and long for control over choices, they also may fear making those choices. Diabetes care can be more complex than rocket science and children need to learn to master their care one step at a time. Unfortunately, diabetes doesn’t permit that time, so a parent or caregiver must step in for the child. Children will either feel the burden of having to be “perfect” for their own sake or to ease their parent’s concerns, or, that they must relinquish total control, however reluctantly. Some children will fight parents openly and aggressively by exhibiting anger and defiance, but ultimately, it is because they sense control has been taken and they don’t know how to otherwise cope with the invisible illness they must now deal with every moment of the day. For those on insulin pumps, diabetes life can be a little simpler. Persons on pumps do not need to eat to feed the insulin and life is no longer lived on a schedule determined by shots. But that does not mean pumpers are not at risk too. Shot therapy, in my opinion, is brutal. It is hard on parents and hard on children. Not every child (or adult) is suited for life on an insulin pump and I don’t intend to imply everyone should run out and get pumped, but let’s face facts, with shots, you have to live on a much tighter schedule controlled by injections. Some children handle being “told” what to do by glucose reading and shots better than others do. If your child is refusing to eat, lying about eating, under bolusing, or not injecting at all, it is time to talk with a professional about counseling and maybe even about switching to another type of insulin therapy suck as pen-injections, Lantus (the “poor man’s pump), or even to an insulin pump. Your child’s behavior should not be punished or criticized; it should be taken as a message to be carefully considered, and then responded to, appropriately. How Parents Can Help Prevent Eating Disorders Learn Coping Skills. There are many things parents can do for children with diabetes to help them cope. The first is to actually teach them coping skills (see our “Stress Management for Children” section for more details). Living with a chronic disease is not easy and requires new emotional skills. Learn them yourself and teach them to your child. Give Back Control. Find ways to give your child control in lifestyle, food choices, activities, and other routines that are less important, such as bedtime, TV shows, or a new responsibility, or privilege. Obviously, you cannot turn care decisions over to a 5-year-old, but you can ease up on other areas in their little lives to help them feel more empowered by granting them reasonable self-governing decisions. The key to raising any child is respect and choosing your battles wisely. Diabetes is a big battle, but whether to sleep with the bedroom door opened or closed, and the yellow vs. the hot pink sweater with the orange and purple pants are not battles worth fighting. Be a Grownup. As the cold saying goes “put on your big girl panties and deal with it.” Reassure your child. Shelter them from your own anxieties. It may be okay to cry with them once in a while but it is never okay to cry on their shoulders. When Elizabeth is down about diabetes I confer with her and affirm her feelings, yeah, I say, diabetes sure stinks and it is not fair (Islets of Hope even has an online discussion group entitled Diabetes Stinks). But I never tell her she is lucky to be alive, or that her problems are not real. I tell her that her fears are to be talked about not just thought about because I will look after her and do the worrying for her. Ease Up. One of the hardest things I had to learn to do after Elizabeth was diagnosed was to stop telling her about all the things she could not do… “No, your sugars are high you cannot go out and ride your bike… no, you cannot have a sandwich, you need a marshmallow … no, you cannot sleep over at Sally’s house because who would test you in the middle of the night?" I was scared to death for her to the point I would not sleep at night but a few minutes at a time because “something” might happen. Elizabeth picked up on my anxiety as I became overprotective. She began echoing my unspoken fears and talked a lot about dying. She knew, without my saying it, what I was thinking by the way I controlled her entire life’s activities. Accentuate the Positive. To help her cope I began focusing on all the things she can do and hid my own worries better. I now have an entire stash of half a dozen fast sugars and she gets to choose which one she wants (her favorite is a marshmallow with a gumdrop and her least favorite is juice). We invited Sally over to our house (her mom wouldn’t let her come either; apparently, even nonD parents can be overprotective too). And as for the bike riding I suggest we play cards or cuddle with a book instead – not "until your sugars come down" but because I love her and she’s always happy to have my time and attention when it is focused on the positives. Get Counseling - Diabetes is something that affects the entire family not just the person diagnosed. Family counseling, or a support group may be beneficial in helping with the difficult emotional and logistical adjustments to families living with diabetes. Don't wait until there is a problem to look for support. Individual counseling for children or other family members who are having a hard time coping with diabetes can help the entire family. Sometimes, just having someone to talk to can be healing. (IOH has online support groups for siblings, parents, and even grandparents.) Join a Support Group - Approximately six months after Elizabeth was diagnosed (at age 4) with type 1, we attended our first support group meeting. It was wonderful to meet other families face-to-face. Elizabeth was delighted to be able to meet other children with diabetes and was reassured when she saw them running around like (nonD children) carefree as puppies. They children played and chatted, but not once did I hear them talking about diabetes. Somehow, the thing that seemed to bind the group of children transcended diabetes; just being with a group of peers where diabetes did not have to be explained to others seemed enough for Elizabeth. Having fun and making new friends seemed most important. When one child's pump alarm sounded an occlusion error, the kids made jokes about her "cell phone calling for Mom." The parents, however, talked almost exclusively about diabetes care, tips, humorous moments, and fears; something they needed most. If you are in, or near Upland, CA, please contact Lahle@isletsofhope.com and ask about IOH's San Bernardino area support group for pre-diabetes and diabetes types 1 and 2. Get Involved with Diabetes Activities in Your Community - The Juvenile Diabetes Research Foundation (JDRF) hosts many events throughout the country. They also have chapters and volunteer opportunities in every state. In October of 2005, our family participated in the "Walk for A Cure" event local to us. It was a profound experience being surrounded by so many affected by diabetes and to see so many without diabetes stand up to support a cure for me and my daughter (and everyone else with diabetes). Local events are a great place to feel proactive with a disease that sometimes leaves people feeling helpless, and to meet other families for future play dates, babysitting exchange services, and even to find out about schools, products, and services that are tailored for persons with diabetes. Large group events are a great way to help families feel connected and not so isolated. For more information about upcoming nationwide and local events, post your own group's event, or to learn how to start your own group, please visit out Events page. Treatment Begins With Acceptance Remember how hard it was accepting your (or your child’s) diagnosis? There was no denying the diagnosis because the symptoms were self-evident; eating disorders are not as easily discovered and diagnosed. You have to come to acceptance that you, or someone you may know, could have an eating disorder. You may not want to believe it, but if you have reason to suspect someone with diabetes is suffering from an ED they need your help because they usually are unable to help themselves. The earlier an ED is detected the easier it is to overcome. There is hope for everyone, never think that it is too late to get help, but the longer the disordered eating behavior has been in place, the harder the work to overcome it. Treatment for Eating Disorders Treatment for eating disorders involves diagnosis by a medical doctor or mental health professional and development of an individual treatment plan. (Interest note: because EDs can cause tooth enamel erosion, dental professionals are often the first to notice when a person has an eating disorder.) Different people respond to different treatment options available and there is no "one size fits all" for ED treatment therapy. But it is clear that few people are able to overcome eating disorders without professional help and ongoing support. There are many types of therapies available for individuals and families (eating disorders, like diabetes, affect the entire family). One of the better web resources I have found on eating disorder treatment is on Drug Digest.com. They seem to insinuate that medication (in combination with other treatment) is standard protocol. Not so. There are many persons with eating disorders that respond well to therapy and behavioral modification without drugs -- but this is not something that you should decide for yourself. Still, I will refer you to their site for thorough information about different treatment approaches, at what stages different approaches are taken, and when hospitalization may be necessary. Drug Digest Eating Disorder Treatment Information Page. How effective any treatment program is depends upon patient motivation, their support system, and how carefully the treatment program was tailored to match their individual needs. It is important to understand that eating disorders are not really "cured." New coping skills, nutritional, and behavioral modification are taught and a person enters into "recovery" from their eating disorder. Follow-up support is key to the successful outcome of a person with an ED because the danger for relapse will exist for life. Anorexia Nervosa. Treatment programs vary, but generally, studies seem to show that anorexia responds to therapy, home support, certain types of medications, and often requires hospitalization and/or residential treatment programs to stabilize the patient. It is a challenge to overcome anorexia, but it can be overcome. Anorexia is not something you can treat yourself -- it always requires professional help. Bulimia and Binge Eating Disorders. Bulimia and binge eating also require counseling and sometimes residential treatment may be beneficial. Studies have shown that some people with these conditions respond just as favorably with the right counseling (and no medication) and support as do patients who also receive medications to relieve the compulsive behaviors. These disorders are learned behaviors and not classified as a mental illness but you need professional evaluation and determination as to what an individual's treatment needs are: therapy alone, or combined treatment of therapy and medication. Ongoing support for anyone with an ED is critical. Support groups and follow-up counseling sessions are an important part of overcoming an ED. Once a person has an ED they will be at risk for the rest of their life for relapse unless they learn new coping skills and have adequate support – but again, it must be said, they can overcome! Once a person reaches "recovery" (when they are no longer practicing the behavior), they still need support. Those who are most successful at long-term recovery are those who continue with counseling, therapy, or become active in recovery or support groups (like Overeaters Anonymous). Overeaters Anonymous (OA) - Is not a diet group. It is a 12-step program for people with eating addictions and disorders. The program is similar to alcoholics anonymous but tailored towards disordered eating. Meetings are held all over the USA and Canada and OA also has online support groups. See sidebar for more information about OA Support from Islets of Hope. The IOH also has a support group for anyone battling with an eating disorder (diagnosed or undiagnosed). The list is open to those in recovery, relapse, or still in denial. The "ED" list is completely anonymous and fully moderated by a woman who has battled and overcome anorexia and bulimia successfully. She has mentored (not treated) hundreds of persons affected by EDs over the past 7 years. If you wish to join, visit www.isletsofhope.com/diabetes/support/discussion_groups_1.html) Eating Disorder Glossary (Simplified) Anorexia Nervosa – An eating disorder where the person restricts food to the point of starvation. Those with anorexia may also use purging behaviors to avoid weight gain. Anorexia is usually diagnosed when a person is 15% or more below a normal body weight. As with all eating disorders, anorexia affects children and adults of both sexes. (Singer Karen Carpenter died prematurely from complications related to anorexia.) Annies – Slang term referring to those with anorexia. Billies – Slang term referring to those with bulimia. Binge – The act of eating large quantities of food usually in rapid succession over a short period of time. However, bingeing sessions can also last for hours. One determining factor that differentiates a true binge from simply overeating is that the person bingeing usually feels anxious, and a sense of being out of control. Bingers usually feast on certain food categories, the most common being high-fat, high carbohydrate (often processed) foods. Binge eaters tend to be overweight. Persons who binge and then purge, as in the case of bulimia, tend to be at or near a normal body weight. Binge Eating Disorder – A person who is binges. They may sometimes use purging methods but not at a frequency sufficient to be diagnosed as true bulimia. A person with this disorder may turn to food to cope emotionally, and often feels out of control while bingeing. Bulimia – Sometimes referred to as bulimirexia or bulimia nervosa, this eating disorder is identified by cycles of bingeing followed by purging. Most persons with bulimia at close to a normal body weight. (Princess Diana of Whales suffered from bulimia for many years.) Purging – Any act that counters caloric intake. Purging includes periods of fasting for 24 hours or longer, forced vomiting, excessive exercise, and inappropriate use of laxatives, enemas, and diuretics. Warning! Some persons will use syrup of epicac to induce vomiting. This is extremely dangerous and can lead to cardiac arrest. If you find hidden bottles of this over the counter medication get help for your child immediately. Restricting – Refers to eating behavior that avoids certain foods or entire food groups (i.e., all fruit) or categories of food (i.e., all fats or carbohydrates). Also refers to severely limiting total caloric intake. Stuffing – The act of over eating as in a binge, to shove or “stuff” feelings of anxiety, fear, loss, even positive emotions that are overpowering, down inside a person. The feelings may later be “purged” for a temporary sense of release.
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