Know the Signs: Eating Disorders + T1D
Editor’s Note: Beyond Type 1 is proud to provide support for the We Are Diabetes Mentorship Program. If you or someone you know is struggling, the We Are Diabetes Mentorship Program is a FREE peer mentoring service available to individuals committed to recovering from ED-DMT1 (dual diagnosis of type 1 diabetes and an eating disorder). Our Mentors provide safe, confidential support as they work to encourage and guide their mentees towards their goal of solid and permanent eating disorder recovery. More information here.
People with diabetes, especially young girls and women, have an increased risk of developing eating disorders. If you think a loved one might be experiencing an eating disorder in addition to managing their type 1, you might feel like you have no idea how to help them through it.
Sara Mobäck is a Swedish diabetes advocate and has overcome anorexia nervosa and orthorexia (which she posts about on Instagram). In addition to her type 1 diabetes (T1D), Sara also has celiac disease and a nut allergy, and she presented at the 2018 DEEP conference in Amsterdam about her experiences with type 1 diabetes and eating disorders.
Sara recently spoke with Beyond Type 1 about steps to take if someone we love is showing signs of an eating disorder.
“Food is something that is important for survival for everyone, but for those with diabetes it must be done in combination with insulin,” Sara said, “When it comes to diabetes and eating disorders, I think it is important to understand that it is not possible to approach them exactly like you would for a person without diabetes.”
The fine line
Analyzing someone’s relationship with food can be complicated, especially when diabetes is involved: it can be hard to tell the difference between simply counting carbs and disturbed eating behavior, or to know when someone has an eating disorder that is separate from diabulimia, which is an eating disorder classified by someone withholding their insulin in order to lose weight.
“It is difficult to talk about how a person with diabetes focuses on and ritualizes food,” Sara said, “I find it difficult to know what a positive relationship to food actually is. I, a person who has type 1 diabetes, must control what I eat every day to manage my diabetes in the best way possible. Even if some criteria for an eating disorder are present, that doesn’t necessarily mean that a person with diabetes has an eating disorder.”
Now, Sara realizes that her eating rituals became warped when she cut out all carbs from her diet—for the wrong reasons.
“Initially, it was to get even better blood sugar levels—to get an even straighter continuous glucose monitor (CGM curve to show my social media followers. And myself. When I finally realized that I ate very little, I had difficulty knowing if it was just a “healthy” way to manage my diabetes or if I really had a problematic view on food.”
Know the warning signs
Despite the grey area between conscientiousness and eating disorders, there are signs to look out for. “In general, the warning signs are people worrying about their weight, what they eat and how they look,” Sara said.
The American Diabetes Association’s list of physical symptoms for various eating disorders includes:
- Increased A1c levels and instances of diabetic ketoacidosis (DKA)
- Obsession over physical appearance and exercise
- Extreme restriction of calorie intake
In addition to physical signs, Sara described other warning signs in her behavior aside from how she treated food: “I wasn’t happy about my daily life, so I started to distance myself from my social life. I thought that I should change myself to be accepted by others.”
While it’s important to recognize the signs, it’s also critical to note the context. Sara advises family and friends to pay attention to their gut instinct when something doesn’t seem right.
“It’s important to note if the person starts behaving strangely, or if the person suddenly doesn’t want to eat some type of food or refuses to participate in social contexts where food is involved, such as dinners.”
Bring it up
So if a friend is displaying signs of an eating disorder, what should you do?
“In my experience, people with an eating disorder are often afraid to ask for help,” Sara said. “Some are struggling to find a way to start a conversation about their problem, while others have such low self-esteem that they simply feel they don’t deserve any help. Whatever the case, eating disorders will only get worse without treatment, and the physical and emotional damage can be severe.”
In other words, look for an opportunity to bring it up and don’t be afraid to talk about it: “If you are worried that someone might develop an eating disorder or already has one, speak up. You may be afraid that you’re mistaken or that you will say the wrong thing, but it’s so important that you don’t let these worries stop your voicing for your concern.”
Sara offered some tips for discussing this tough topic:
- Explain your concerns. Refer to specific situations and behaviors you’ve noticed, and why they worry you.
- Don’t offer solutions. You should only point out that you love the person and that you are concerned about their health.
- Try not to talk about eating or weight during meals or other social situations around food. Make an effort to talk about other things.
- Offer support. Ask your friend if and how they want you to help.
She continued, “I remember that my friends initially asked if I was exercising too much and that they had an anxiety behind my weight loss. Then a friend told me about her experience with an eating disorder, and she said she saw the same behaviors in me. It was the start of my own thinking about how I felt, physically and psychologically.”
Form a support system
After talking with your loved one, take stock of family, friends, healthcare providers and even social media connections who all create a community of support. You can then locate resources and professionals to help make decisions about what kind of treatment might be needed.
“I have had incredibly good support since day one from my family. They have always been there for me even though I haven’t always been so open and accepted my condition.
With her family around her, Sara chose to seek expert help: “I called a clinic that helps people with eating disorders and asked if they could accept me for professional treatment.”
It took six months of outpatient treatment for Sara to feel confident to start living her life again. She learned how to talk about her eating disorder and found energy to look for a new job.
“One thing I had to remember, and still have to remember, is that this eating disorder requires so much of my will power and discipline to get out of,” Sara said, and her type 1 makes her feel separate from others dealing with eating disorders.
“Something that makes me feel different from a person who doesn’t have diabetes is probably that I can’t let go of the control over food to 100 percent. I am still trying to live a healthy life with control of what the food contains—it is a risk that exists and a risk I must take. I believe that now that I am aware of what I need to do to feel good and for what purpose, I know that I can become fully healthy despite needing control over what I eat.”