Community Table: Eating Disorders + Diabetes

Community Table is presented by the JDRF-Beyond Type 1 Alliance and made possible with support from Abbott Diabetes Care, Dexcom, Lilly, MannKind, Medtronic, Omnipod, Roche Diabetes Care  and Tandem, active partners of Beyond Type 1 at the time of publication.

During our first Community Table discussion, Beyond Type 1 sat down with a group of experts and community members to focus on the realities of eating disorders within both the type 1 and type 2 communities, and share helpful resources and personal perspectives. Watch the discussion in full!

Speakers included:

• Ann Goebel-Fabbri, who served as the moderator for this event and is a psychologist, having recently published Prevention and Recovery from Eating Disorders in Type 1 Diabetes
• Eritrea Mussa Khan, who has had type 1 diabetes since 2001 and is a content creator at Diabetic Doing Things
• Mary Van Doorn, who has lived with type 2 diabetes for over 20 years and created Sugar Mama Strong—a support, fitness and wellness group for women with diabetes
• Taylor Johnson, who was originally diagnosed with type 2 in her teens but re-diagnosed with type 1 a few years later, and is an active member of the community
• Kathlin Gordon, who has had type 1 diabetes for 38 years, is a representative for We Are Diabetes, and a CDCES
• Dr. Jose Jimenez-Vega, a pediatric endocrinologist, with interest in the clinical care of people with diabetes, both type 1 and type 2

Partial transcript of conversation below, edited for content + clarity.

What type of eating disorder do you see most in the patients with diabetes that you encounter?

Kathlin: I see quite a combination of all of them. People have the wrong information, or there’s not enough information from clinicians that they have been seeing to really appropriately deal with their diabetes. They’re stressed about how much they weigh; they have to count every carb that goes in their mouth. There’s an overemphasis on that. Not only food deprivation, but also overeating. I see that quite often as well. Overeating at night, nighttime, binge eating.

Jose: I see a combination of everything. One of the first things that ingrains in my head is during the unfortunate time of the diagnosis of a patient with diabetes, the parents will say, “My child won’t be able to eat anything or will have to go into a diet.” There’s already that pressure that the child can’t do these things. It’s like that seed that gets planted in the head to the parents, unfortunately. It’s more challenging if you have a teenager where they were used to eating whatever they wanted and now they have to look at what it is, what it’s not, count the carbs.

What are some personal experiences you have had?

Mary: I’ve never been formally diagnosed with binge eating; I am self-diagnosed. I have done a lot of self-improvement. I started Sugar Mama Strong, four and a half years ago. I needed support with my diabetes journey, and I didn’t particularly love the communities that I found on Facebook, so I started my own group. Through that community, I realized that I was not alone with my behaviors, with my feelings. It was like this whole world was opened up for me in terms of the emotional side of diabetes.

What I needed was positivity and support and love. I didn’t need food police, I didn’t need someone to tell me that I was doing it wrong. I do that enough to myself as a woman and a perfectionist. For me, I just wanted a positive space. I wanted somewhere where I visited that I was going to feel better when I left, not worse. That was what was missing for me, so I built it myself. We’re about 5000 women, I would say the bulk are living with type 2. We do have caregivers. We do have members living with type 1, 1.5 and gestational. We have all walks of life.

Taylor: Being diagnosed as a type 2 as a teenager was awful. I will always tell people that if I had to choose between the two, I would much rather be a type 1 any day just because of the way people treat people with type 2 diabetes. People assume that if you’re not overweight currently, that you were really, really big as a kid or your parents didn’t take care of you.

Even other people with diabetes, especially type 1s are like, “Well, I can’t do anything about mine. You could.” I got it a lot from my pediatric endocrinologist. She was very set on me being a type 2 because I do have some family history of type 2. I’ll never forget my second appointment with her. I walked in, stepped on the scale and her words to me were, “Oh, you gained five pounds since you were here last. That needs to stop.”

Finally, I was actually taking care of diabetes and things like that, so I kept gaining weight. In every single appointment, it was just a dressing down about my weight, being lazy, I had to be sneaking food, et cetera. That went on for far longer than it should have. It was almost two years before I started taking insulin and I felt terrible.

Eritrea: I grew up in the Latino culture. My family and I spent summers in Mexico, I speak Spanish, my mom is Mexican. With that, I come from a background where the bigger bodies are celebrated within our families, but in our media and our culture and our representation, it’s very much a thin, white aesthetic that is being chased, even in our telenovelas and things like that. For a long time in my childhood, because I was diagnosed as an 8-year-old with type 1, I struggled with the way that I ate food, control, and things like that. There was some time when I was heavy, and my family didn’t relate to that in a good way. It was very much like, “Why are you heavy? This is a problem. It’s a problem that you need to solve.”

Then later in life when I did develop a much more serious eating disorder, it was almost something that was celebrated because I lost all this weight and it was an achievement. I feel like in our culture, there’s not really an understanding that food is fuel, not just what you put into your body to be a certain weight. It’s always been really important to me to get more of an understanding out there in my own community that it’s okay to be whatever weight you are. Your body can do amazing things, no matter what size you are.

How do we know when to be alerted to be concerned about people with an eating disorder or disordered eating?

Kathlin: If I hadn’t had been through my own eating disorder, I don’t think I would be able to recognize the signs as clearly as I do. Looking for: do they do their site changes? Does their A1c stay high? They know all the right things to do but they’re not quite doing it. A lot of times, I see it with being almost orthorexic: they’re going to such an extreme with the foods that they choose to put in their mouth, not put in their mouth, why they are, why they aren’t, the excuses that they have for not doing it.

I had the same excuses, like being vegan, intermittent fasting, low carb diets. It made me also feel very powerful. I had powerful feelings around food that if I didn’t eat for days at a time, then I was accomplishing a goal. In fact, I felt most at home on the days, I felt very comforted by the fact that I could live in this world and I had control over this. If I didn’t know the questions to ask only because I’ve been through it, I think I would miss a lot of the signs. That’s why I say clinicians really need to be educated on this because even when I was studying for my CDCES exam, there were three slides. Literally three slides out of the hundreds we were studying on eating disorders and diabetes, which I found extremely unfortunate.

Jose: It’s a combination of things. One thing that also is helping now is the standardization or increased frequency of screening for depression and anxiety disorders in our kids. Even if the scores are not high, there might be some red flags that might make you converse and say, “I noticed that you checked this one being a little bit high. What’s going on here?” That can be the entrance to that patient to open up and explain some of the things that then will raise more flags for you.

Also, the involvement of the dietitians. They’re a fantastic part of our team and they need to be closely involved with our patients to review a lot of their diet and provide that professional support not only for them, but the providers, who sometimes were overwhelmed with the patient loads and patient things and we’re moving so fast that sometimes we might miss those situations. It’s not that we’re ignoring the patient. It’s just that there is a certain time, a certain move that we have to continue to move and go on.

Of course, the support for all of our diabetes educators and that connection to family is also fundamental because then sometimes I will get information from my diabetes educator that would say, “Jose, this is going on.” I don’t even have to ask questions. They already have opened a path for me, and they let me just walk through what they already know. It’s just a multidisciplinary team-based approach that we need to work each time that we’re seeing our patients. No matter what, we need to ask about all these questions and not just assume that everything is perfect.