Tackling a Tough Trio: Diabetes, Compulsive Exercise, and Sex and Shame
Three guest speakers at the International Association of Eating Disorders (iaedp) annual symposium tackled particularly challenging and sometimes controversial treatment approaches to managing co-occurring diabetes and bulimia, exercise guidelines for patients with EDs, and body image and sexuality in teenage girls.
Diabetes Type 1 and Eating Disorders
Managing an eating disorder and type 1 diabetes mellitus (T1DM) is extremely challenging for clinicians and patients alike, Jennifer L. Gaudiani, MD, Founder and Medical Director of the Gaudiani Clinic, Denver, told the audience in her session, “Eating Disorders in Type 1 Diabetes.”
Puberty is the peak time for diagnosing both T1DM and eating disorders, Dr. Gaudiani said, noting that eating disorders or disordered eating affects as many as 30% of patients with T1DM. A major psychological risk factor is that while T1DM presents with initial weight loss, once blood glucose is regulated and weight is restored, the young patient may believe that “insulin makes me fat.” This can lead the patient to withhold or restrict her insulin to lose weight (diabulimia). Furthermore, Dr. Gaudiani said, the presence of both disorders causes a surge in mortality in these patients. For example, in a 10-year follow-up study (Nelsen et al, 2002), the death rate for those with AN alone was 2%, and for those with T1DM alone was 6.5%, but for those with AN and T1DM, the mortality rate rose to 38%. Concurrent diagnoses of an ED and T1DM confer a 5 times greater mortality rate than AN alone, Dr. Gaudiani added. In another 11-year study, she noted that patients with EDs and T1DM were 3.2 times more likely to die, and their lifespan was cut by 13 years, compared to patients who did not restrict insulin. In addition, comorbidities such as anxiety and personality and behavioral disorders abound in those with concurrent diagnoses of T1DM and eating disorders, she said.
Physical side effects
Edema and the fear of developing it is one of the greatest barriers to recovery and to patients resuming their insulin, Dr. Gaudiani added. Secondary aldosteronism is at work, and insulin itself causes resorption of water and salt in the renal tubule, causing refeeding edema. Clinicians can minimize this by using spironolactone, and making sure patients are forewarned about the signs of diabetic ketoacidosis, she said. The spectrum of new or worsening complications can include retinopathy, gastroparesis, neuropathy and/or neuritis, and vasovagal syncope. An additional problem occurs when hypoglycemia triggers binge eating.
A multidisciplinary team is needed.
Inpatient or residential treatment demands the help of a multidisciplinary team, including therapist, endocrinologist, dietitian/CDE a nurse, psychiatrist, and other medical specialists, as the patient progresses from full support to autonomy.
At first the staff monitors glucose and insulin, and then care is agreed upon by the staff and patient. A RN and the patient agree on the insulin dosage, and the patient then draws and administers her insulin under supervision. In time, patients can then gradually assume full responsibility for diabetes self-care. Dr. Gaudiani noted that team members should have experience with, or at least be knowledgeable about,T1DM and EDs. She added that the key to successful treatment is coordination of the treatment plan and communication about progress. Insulin dosage must be adjusted frequently, collaboratively, and incrementally, both up and down, she said. For outpatient care, patients must be willing to take their insulin to avoid diabetic ketoacidosis. As in inpatient care, outpatient care includes participation by numerous professionals, including school health personnel.
Should patients use an insulin pump? Dr. Gaudiani pointed out that studies have shown that insulin pump therapy achieved significantly lower glycated hemoglobin (A1c) levels with “fewer hypos and no weight gain”; it is also used successfully in TIDM patients with mental disorders. The pros include need for only one “stick” every 3 days; dosing is similar to using a cell phone; and there are fewer barriers to keeping insulin levels steady. The negatives about using an insulin pump therapy are that it is a “24/7 reminder of the presence of diabetes and can be a trigger in outpatient therapy if use of the pump was involved in earlier negative behaviors,” she said.
What is recovery? Dr. Gaudiani said that recovery is defined by patients consistently taking their appropriate insulin doses, not using rigid dieting or excess exercise, or intentionally keeping their blood glucose levels high. In addition, recovery involves flexible and healthy eating by the patient most of the time. Finally, recovery involves not eating due to ED thoughts and feelings, she said.
(For more information on diabetes and bulimia, visit the website, www.diabulimiahelpline.org .)
A Healthy Exercise Prescription for ED Patients
In a keynote session, “Management and Therapeutic Use of Exercise in Eating Disorders Treatment,” Brian Cook, PhD, outlined an interdisciplinary approach to harness the power of exercise to heal the body amid the unique setting of eating disorders. With EDs, he said, the interdisciplinary approach includes psychology, physiology, and nutrition, which he described as a crucial part of successful treatment. Dr. Cook is Assistant Professor of Kinesiology at the California State University, Monterey Bay. [See “The Effects of Compulsive Exercise among Teens,” elsewhere in this issue.]
Two major questions concerning exercise in recovery include the appropriateness of exercise for clients and how to harness the healthful power of exercise to heal the body, he said. EDs are tough to handle, with the highest mortality rate of psychiatric illnesses, coupled with recidivism and secrecy, he added. However, he added, “We see a rising acceptance of exercise in certain eating disorders, especially binge-eating disorder, where the research, which is good, shows that exercise prevents relapse. The data for anorexia nervosa and bulimia nervosa are still emerging.”
Noting that there is so much push-back on including exercise as part of ED treatment protocols, Dr. Cook told the audience that ED professionals need to lay the groundwork for research, etiology, and therapy. Patients with eating disorders are often in a very bad state physiologically, and all too commonly linear thinking leads to excluding exercise in treatment, he said.
Last year Dr. Cook and colleagues performed a systematic literature review of guidelines for exercise in eating disorders treatment (Med Sci Sports Exerc. 2016; 48:1408). The group identified 11 core themes that have been successful when using exercise in ED treatment: (1) use of a team of relevant experts, (2) monitoring medical status, (3) screening for exercise-related psychopathology, (4) creating a written contract of how therapeutic exercise will be used, (5) including a psychoeducational component, (6) focusing on positive reinforcement, (7) creating a graded exercise program, (8) beginning with mild-intensity exercise, (9) tailoring the mode of exercise to the needs of the individual, (10) including a nutritional component, and (11) debriefing the patient after exercise sessions.
The Exercise Medicine Initiative
Dr. Cook also pointed to an important movement that can be used to better define the use of exercise among patients with eating disorders, the Exercise Medicine Initiative by the American College of Sports Medicine (ACSM). The group has established recommendations for pre-exercise health screening (Med Sci Sports Med. 2015; 48:579). The goal is to better identify individuals who need medical clearance before beginning an exercise program, including patients with clinically significant diseases (such as EDs) who would benefit from participating in a medically supervised exercise program.
Every day more technological devices make it more and more easy to sit and do nothing, he said, and the ACSM is working to help clinicians and patients understand exercise in an appropriate fashion, he said, adding that regularly assessing and treating exercise problems fits well with ED treatment. A team approach is a must for developing an exercise protocol, he said. The main thing is that clinicians can’t do this on their own, but instead need the help of other professionals. Professionals in physical therapy and nutrition, for example, have expertise that is essential to designing an appropriate exercise program. They can help determine if exercise is helping or hurting the patient and importantly when it is not useful for an individual with an eating disorder.
Some contraindications to exercise
Medical contraindications to exercise include dehydration, and other negative physiologic effects. However, he advised that, rather than concentrating on negatives, clinicians can help patients become aware of what their body is telling them, and that carefully designed exercise programs can be enjoyable and appropriate for ED patients.
Another point is to help patients imagine themselves as healthy, and to help them become aware of the signals the body is giving. For example, in many exercise programs, such as in yoga, an important aspect of the program is separating good pain from bad pain and improving body self-awareness. Identifying factors involved on overtraining is also important, and getting a patient to accept the negative effects of overtraining and to recognize warning signs of this are important. He recommends that a recovering ED patient start exercising at a slow pace. It is also helpful to draw attention to progress in other areas, such as improvement in body weight, and to tailor that to outcome.
Guiding Girls from Shame to Healthy Sexuality
Author and keynote speaker Peggy Orenstein fielded questions from the audience about helping girls navigate from shame to joy in sex. Orenstein is the author of several best-selling books, including Girls and Sex: Navigating the Complicated New Landscape, and Cinderella Ate My Daughter.
To a teenager, “love can be tricky,” Orenstein said. Parents may not want to indicate a right or wrong way or a way to be physically intimate or be too prescriptive, but ideally teens should be able to draw their own conclusions about what is healthy and enjoyable, while being careful as well.
Today’s teens are supposed to have sex without feelings, she said. She added that, “As a way to move forward, we have tended to value that which was previously assigned to males, such as love and nurturing.” To talk to kids about kindness, benevolence, or about a “hookup,” parents need to express care, concern, and caution about such relationships. Orenstein has found that some girls are rejecting the older ways, and are more likely to be more distant and detached about sexual relationships.
Teaching their daughter about body image and sex is a parent’s primary responsibility, Orenstein said. And, when asked the timelines of development when it is time to bring up question about intimacy and sex, Orenstein said, “Immediately,” and stressed the importance of using accurate language for boys and girls when the discussion arises, and to bridge the gap and encourage a safe space for any questions.
Two countries, two approaches to teen sexuality
Orenstein also described differences between approaching teen sexuality in a healthy way in the US and in Holland. Before the sexual revolution of the 1960s, Holland was very similar to the US as far as discussions between parents and teens about sex. After this, the Dutch took a very different approach, Orenstein said, one that approached teen sexuality as a normal part of life, and promoted teaching teens safety and responsibility about sexuality. In contrast, she said, as a result of American reluctance to deal with teen sexuality, American teens become adults by basically lying to parents about sexuality and substance abuse. This is especially true for American girls, the author said.
In Holland, parents attempt to bridge the knowledge gap, and teens are expected to grow up interdependently. That is, subjects that would be taboo in the US are actively discussed among Dutch families. It isn’t unusual for a teenage girl to freely discuss with her mother and mother’s friends the fact that she had sex the night before. The idea behind this is that such actions are not promiscuous. Instead, the reality is that the person she was with is a good human being and is known to the family.
She described an online study of 400 girls who were randomly chosen from Holland and the US. The conclusion of the study was that that in every way the Dutch girls emerged from the study as having an approach to sex without negative consequences. They were less likely than the US girls to get drunk, and more likely to say they could communicate with and enjoy their sexual partners, more likely to know their sexual partners, and more likely to have more confidence about their body image. Individual follow-up sessions revealed that among the Dutch girls, their doctors, parents, and teachers talked to them at an early age about the emotions and the pleasures of sex. In contrast, it became very apparent that American parents were not comfortable talking with their children about sex. American parents tended to frame sexual activity in terms of risk and danger, while the Dutch parents talked about balancing responsibility with joy. Orenstein added that, as a parent, learning this led to a profound shift in her own attitudes.
Orenstein stressed the importance of talking to teens and providing a safe space where they can ask any questions about sexuality and particularly when a relationship is getting close. “We have lots of opportunities when we take sex out of the silence and help develop a thoughtful and aware person,” she said.
She noted that there are ways to directly talk about sex when not directly stressing the sexual act, for example, helping children learn about male and female bodies and also learning about boundaries, such as learning that “No really means No.” Websites and church-based programs such as Our Whole Lives: Lifespan Sexual Education, conducted by the Unitarian Universality and United Church of Christ, provide information for schools and churches, and even correctional facilities. Information modules begin with information designed for 5-year-olds and continue through middle and high school, to college and to adults in general. Such programs help parents and other adults learn about how to talk about sex and development with kids. “We were not raised to have these conversations,” Orenstein said, “but we just have to get over it.”
In general, girls are taught to choose desirability over their own desires, she said. Orenstein wrote her book, Cinderella Ate My Daughter, in 2011 to explore the phenomenon of the popular “princess culture” and in particular how the concept is marketed to young girls. The marketing of clothing and accessories to young girls is a multi-billion-dollar effort that tells girls, ‘It’s all about me, and I am special.’ Orenstein said, “The princess-themed marketing wasn’t about the characters or the bling or the things being sold, but instead is an emphasis on external appearance and beauty, to get people to say how pretty you are all the time.” Now the marketing has gone beyond the dolls or gowns and tiaras to target girls as young as 4 years old with their own bath balm, nail art, and a constant emphasis on appearance. By the time a girl reaches adolescence, she knows she needs to be desirable to men before they really understand what this means, Orenstein said. Over time, the disconnect becomes real.
The author said she was reminded of this disconnect when she interviewed girls who think they will not get joy or love from sexual experiences. One girl said she participated in fellatio because by doing so she didn’t have to engage her body and could keep herself distant while encouraging a boy to like her and to continue their relationship. The big stress was on keeping the boy to like her and to keep him happy. Orenstein says she receives many e-mails from girls who express that the idea that touching or feeling is wrong if those feelings arise from sex. Orenstein said the young men she has interviewed do want caring relationships and connection with their female partners but are not generally allowed to express this; one boy in high school told Orenstein that he trained his body to disconnect from his partners.
She urged parents to have real conversations with their children and to talk about their friends, too. Her own daughter had friends with undiagnosed eating disorders and self-harm and came home and discussed this with her mother. There are many helpful Internet sites that can help parents begin and continue the essential conversations about sexuality, Orenstein said.
In the March-April issue article reporting on the keynote presentation, “Making Sense of the Complex Eating Disorder,” we identified Dr. Beth Hartmann McGilley as a sports medicine expert; this should have read, “sports medicine consultant.”