Quinn Nystrom was a competitive figure skater growing up in a small town in Minnesota. At age 10, she became hyper-focused on her body and believed that her weight directly impacted her ability to succeed in a highly demanding sport. She weighed herself daily, practiced restrictive portion control, and was hypervigilant about counting calories. Aware of these alarming changes in her eating behaviors, Nystrom’s parents arranged a visit to the family’s pediatrician. The doctor said, “Yes, she’s underweight. Make sure she eats dinner with you guys.” Potentially debilitating body image issues were not addressed with Nystrom, her parents or her skating coach.
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While continuing to skate competitively, Nystrom was diagnosed with type 1 diabetes (T1D) at age 13. Her younger brother had been diagnosed two-and-a-half years earlier, which made her diagnosis all the more devastating to her family, who were aware of the day-to-day challenges of managing T1D. Her weight had decreased significantly due to a delayed diagnosis, which was just fine with Nystrom. Her doctor said, “I know that you’ve lost a lot of weight, but don’t worry — as soon as you start taking insulin, all that weight is going to come back.”
Upon hearing those words from a trusted healthcare professional, Nystrom believed insulin was going to make her fat. She struggled with eating as a figure skater and was frightened, as she knew insulin was her life support. For her, the possibility of insulin causing weight gain was problematic from both an emotional and a physical perspective.
When Nystrom was diagnosed with T1D in the late 1990s, the language used by healthcare professionals was not individualized or person-centered. Food and blood glucose were either “good or bad,” and clinicians often lacked empathetic communication. Diabetes education focused solely on numbers, and the promotion of a mathematical algorithm to manage a teenager’s diabetes accelerated Nystrom’s concern about her body image and weight.
Her family believed her diagnosis would cure her eating disorder because she was instructed to eat specific foods on a set schedule. She recalled receiving praise for “following” a prescribed meal plan. In reality, her diabetes only emphasized her body image issues and transformed into full-blown bulimia. According to Nystrom, she used her T1D diagnosis as a “get out of jail free card” for her eating disorder. Her parents, teachers and coaches would praise her for not eating sugary foods and being a “good diabetic.” As she reached her 20s, Nystrom would say to herself, “Oh, I have diabetes,” which she believed gave her permission to restrict food, binge and purge.
If she experienced a low blood sugar, she felt a sense of liberation and gave herself permission to eat as much candy and cookies as she could stuff in her mouth. Afterward, she felt guilty and would purge by either throwing up or exercising to excess. Other times, she would completely restrict her food intake.
It was an awful cycle, laden with shame, blame and guilt.
The complexities of eating disorders and type 1 diabetes
Eating disorders in conjunction with type 1 diabetes are a serious, complex and potentially life-threatening issue. Studies estimate that 36% of girls and women with T1D struggle with eating disorders, and more than 30% of women with T1D report restricting insulin in order to lose weight. This dual diagnosis is associated with serious medical complications.
The human body requires insulin to shuttle glucose from the bloodstream into the cells so it can be used as fuel or stored as energy. If insulin is unavailable, withheld or otherwise manipulated, rapid weight loss occurs as the body rids itself of glucose and fluids through the urine. Those who omit or restrict insulin are at higher risk for long-term diabetes complications such as heart disease, stroke, neuropathy (nerve damage), retinopathy (eye disease) and nephropathy (kidney disease), as well as dangerous short-term complications such as diabetic ketoacidosis (DKA), which can result in metabolic acidosis, coma or even death.
ED-DMT1 (Eating disorder-diabetes mellitus type 1)
ED-DMT1 is the clinical term used to describe a person who has T1D and an eating disorder. (The commonly used term “diabulimia” specifically refers to not taking enough insulin in order to lose weight.) ED-DMT1 covers a variety of eating disorder symptoms, including restricting food, binging and purging, over-exercising, laxative abuse and other common symptoms.
Marcia A. Meier, BAN, RN, CDCES, is the program manager at the Melrose Center in Minneapolis, which offers all levels of care for people with eating disorders, including inpatient, residential, partial program and outpatient services. According to Meier, “the most common eating disorder symptom in a person with ED-DMT1 is insulin omission and manipulation because of its ease of application. Insulin omission seems like a miracle, in spite of the immediate high blood sugar symptoms including extreme thirst, frequent urination, foggy thinking, exhaustion and depression, which make a person feel awful. Individuals suffering from ED-DMT1 may not be focused on how they are feeling or on potential complications associated with high blood glucose. Their eating disorder takes over their entire life. If body weight increases, insulin omission is often the first course of action.”
Know the signs and symptoms of DKA and “insulin edema”
People with type 1 diabetes must learn the signs and symptoms of DKA — which include excessive thirst, frequent urination, nausea and vomiting, confusion, fruity breath, and weakness or fatigue — and when to seek treatment if necessary. In addition, it’s essential that they know that people with ED-DMT1 may retain fluid as they begin to lower their blood glucose levels. This is sometimes referred to as “insulin edema” and can result in rapid weight gain. According to Dr. Ann Goebel-Fabbri, author of Prevention and Recovery From Eating Disorders in Type 1 Diabetes, “People with diabetes deserve to understand that it is fluid and not ‘fat’ they are gaining and that the situation will improve over time.” People will often say that they have experienced this type of weight gain in the past and went right back to their eating disorder out of fear.
In treating ED-DMT1, blood glucose levels should be lowered gradually over a period of months. This may help reduce the severity or even presence of edema. It will also help prevent “false lows,” or having the symptoms of hypoglycemia without being truly low. Going slowly may also feel less overwhelming to the person being treated.
Support for those with T1D and an eating disorder
“Finding providers who are willing to learn can be very difficult. The culture of ‘non-compliancy’ is still alive and well in the world of diabetes care, and this is a major deterrent for people living with this deadly dual diagnosis from getting the help they need,” says Asha Brown, executive director of We Are Diabetes (WAD), a non-profit organization devoted to providing support, education, guidance and hope to people living with T1D who struggle with disordered eating behaviors. According to Brown, “Judging and shaming a person with type 1 diabetes about the risks of their behaviors when they’re struggling with food is only going to make a catastrophic situation worse.” She founded WAD after navigating her own eating disorder recovery.
Services offered by We Are Diabetes include referrals to credible providers and treatment centers, and support for both individuals who are struggling as well as their families and loved ones. WAD offers a unique mentorship program (see sidebar list below) and resources designed specifically for people with T1D and eating disorders, as well as education for healthcare professionals.
According to Dr. Goebel-Fabbri, “Fear tactics and finger-wagging about developing diabetes complications are ineffective. Those methods may leave a person feeling judged and misunderstood and may lead to more secrecy. Instead, express caring, empathy and genuine concern. People should speak about what it is that they are noticing, what they see that has changed. Bring up your concerns and ask about how you can be helpful and supportive while building trust. Loved ones should also feel free to speak with the healthcare team about what they are noticing and perhaps help to schedule an appointment.”
We Are Diabetes (WAD) Mentorship Program
The We Are Diabetes Mentorship Program (in partnership with Beyond Type 1) is a free peer mentoring service available to people committed to recovering from ED-DMT1. According to the organization, “WAD mentors provide safe, confidential support as they work to encourage and guide their mentees towards their goal of solid and permanent eating disorder recovery.”
“This program is available to anyone age 14 and older living with type 1 diabetes who is working towards recovery from an eating disorder. Participants are matched with a trained WAD mentor and will work with their mentor through preferred forms of communication (phone, text, video chat) on a weekly basis.”
“The WAD Mentorship Program reduces the sense of isolation many experience in their day-to-day management of their chronic illness and their eating disorder recovery.”
Nystrom’s treatment plan
Nystrom’s eating disorder recovery included outpatient and inpatient treatment, out-of-state residential treatment and transitional care. After attending the funeral of a friend she met in an eating disorder group, she realized that if she didn’t get the help she so desperately needed and start being honest with healthcare professionals, she would never recover. Her triggers are still present, and she doesn’t think of recovery in the past tense. She looks at it as making the decision to choose recovery every single day she wakes up, because she never wants to go back to her old way of living.
Nystrom continues to work on her eating disorder recovery and is grateful to her family, friends and the T1D community for support. She leads efforts in her home state of Minnesota to fight the high costs of insulin. She is currently running to represent Minnesota’s 8th Congressional District.
Resources available for people with type 1 diabetes and eating disorders
Eating Recovery Center, Colorado
Park Nicollet Foundation’s Melrose Center, Minnesota
Want to learn more about type 1 diabetes and eating disorders? Read “Diabulimia.”