Today we’re talking about something a little sensitive… eating disorders. Please be kind to yourself – if you find any of this triggering, there’s no reason to read on. But it is an important conversation to have… Eating disorders thrive in secrecy, and we want to be able to bring the conversation into the light.
We know that depression and anxiety are far more prevalent in people with diabetes, but what about eating disorders? Especially when you’re living with Type 1 diabetes, you’re almost encouraged to have an obsessive relationship with food. We have to count our carbs and plan our meals and inject the right amount of insulin and never leave home without a snack and don’t cheat – even the language around eating is very emotive.
Eating disorders and diabetes
The most common eating disorder among people with diabetes is diabulimia – that’s when people with Type 1 deliberately take less insulin or skip injections so that they can lose weight.
But even more pervasive is T1DE, which stands for Type 1 Diabetes and Disordered Eating. This is a broader term that refers to a preoccupation with food, shape or weight that is considered to be outside of normal behaviour. People with Type 1 diabetes are twice as likely to experience disordered eating.
We asked our South Africans with Diabetes community if they wanted to share their stories – and they did.
“I have a bad relationship with food, because as diabetics we have been conditioned into thinking food is the enemy,” shared Theresa. “After 28 years and weighing 45kg my body just decided enough, and it stopped me dead in my tracks, causing a breakdown. After a year I changed my lifestyle, in recovery mentally, picked up 4kgs , and I see food as my friend nourishing my body and mind.”
Marilize is struggling with it at the moment… “Mentally struggling with allowing myself to eat as I’m scared my sugar levels might spike, or not be in range,” she says.
Sandra has gone the other way. She says, “My brain is in denial, my mind tells me I’m diabetic but I just eat as a normal human being – no restrictions on anything. It’s not nice living with depression too. It’s really hard this journey.” Even that phrase – normal human being – breaks my heart a little.
And Joanne has another different flavour to share – “Not so much an eating disorder, but I suffer from a crippling fear of hypos so when my sugar is on a downward trend I always severely over-correct by stuffing my face and I usually end up with rollercoaster readings for the rest of the day. It makes calorie and portion control impossible.” A lot of people agreed with her – fear of hypos and over-correcting as a result are clearly a big problem.
To help us make sense of eating disorders and diabetes, we’ve asked registered dietician and certified intuitive eating counsellor Gayle Landau to speak to us about her experiences with eating disorders in those of us with diabetes.
What is an intuitive eating counsellor?
Intuitive eating is really a platform or framework that would allow you to explore and help you restore a healthier relationship with food and your body. And it does this by really focusing more on the behavioural aspects that are guiding or directing our eating. And also putting a bit of context – not only focusing on what a person is eating, but rather when, where, how, and what are the barriers to this process of caring for ourselves nutritionally.
It’s very rooted in this internal process, kind of learning to trust the internal process to help you make decisions versus an external process, which is what diet mentality or diet culture is all about. So in diet culture, there’s always this emphasis on being told what to eat, when to eat, how much to eat.
Have you had much experience with eating disorders in people with diabetes?
Yes. And that’s just because eating disorders don’t discriminate, they can occur in younger or older people, they can affect people of any gender orientation, any religion and race.
Binge eating disorder is one of the more prevalent eating disorders in the general population of people living with diabetes. And unfortunately some of the cases of diabulimia are so severe that they become fatal. Some cases are so complex that they require a multidisciplinary approach that involves psychologists and psychiatrists to ensure adequate support.
Why do you think they’re so common?
I would say the greater percentage of people with diabetes are probably in the space of disordered eating, where they are going on diet and off diet.
So what happens is we bring on all these food rules. And we know that dieting culture and diet mentality and being on a restrictive diet, unfortunately, set us up for failure because it actually causes us to be anxious around our eating. The fear of a hypo, the fear of going high, makes us less trusting of our body in the moment. And we either under respond or overreact.
Unfortunately, weight stigma is another factor that we need to address. Weight stigma is when we hold negative attitudes towards people in larger bodies, and certainly in the diabetes space, there’s really a big message that being fat is the worst possible outcome. Which is, of course, false. Anybody who has experienced judgment or shame because of how their body looks knows that over time that message gets internalized deep in your psyche. And so even though you’re no longer hearing a mean doctor or counsellor, or whoever it was, say a discouraging comment, the internalized shame sits deep within you, and then it actually interferes with your relationship with food.
How can we spot the warning signs of eating disorders?
If, outside of your regular meals and snacks, you’re constantly thinking about what to eat or planning meals or worrying about food, that is a cause for concern. There are different types of eating disorders. So you have anorexia nervosa, which can actually occur in any size body, and bulimia, which is found in a person with a tendency for severe restriction, and then binging and then a need to purge or vomit or get rid of those goods. So diabulimia is actually a form of that.
I guess a warning sign would be an unexplained increased in HbA1c levels or repeated episodes of DKA. Other warning signs would be an over concern of how you look – about body size and shape. Again, another another form of bulimia, and it can also occur together with other eating disorders such as anorexia or binge eating is exercising obsessively or too intensely or for too long. Another thing may be a tendency towards always opting for the fat-free or low calorie meals.
How can we help someone with diabetes who is struggling with an eating disorder?
If you are caring for someone with diabetes, and you are seeing some warning signs, it’s always important not to focus on on looks, focus more on attributes and behaviour and less about looks. Try to encourage family meals because eating disorders are quite secretive.
If you see a loved one engaging in secret eating and hiding and you notice they feel uncomfortable eating in front of certain people or you notice they are skipping meals or they haven’t needed to order more insulin, let it be a way of opening up a conversation. You could say something like, “I’ve noticed you skipping meals,” or, “I’m trying to understand why we haven’t needed to order more insulin, we seem to be having a lot of insulin still available.” Avoid any judgement, just open the door to a conversation.
Sometimes we avoid family meals because we’re worried someone at the table is the food police. Family members or loved ones need to be empathetic and stop judging every food choice that is made. Eating is not just about nourishing the body, there is an element of pleasure and satisfaction and sometimes eating becomes less joyous, and it just becomes very regimental.
Lived experience of an eating disorder
I also wanted to get the perspective of someone living with Type 1 who has overcome an eating disorder, so I’ve asked Elré Clarence to join us. She’s been living with Type 1 diabetes since the age of 10 months, and has a wealth of experience with pretty much every aspect of the condition.
You’ve recovered from an eating disorder with Type 1 diabetes – what can you tell us from the other side?
Well, yes, that’s correct. I actually got diagnosed last year with an eating disorder. And I knew that I was struggling with one, but no doctor and no dietician really put a name on it. So when I was diagnosed, I was like, “Oh my word, okay. Someone saw me, someone understands. And I can actually start working with it.”
I am very focused on what I put in my mouth. We talk in our sessions about sober days. It’s been 26 days now, since I broke away from my eating plan. I feel so much better, my body feels better, my sugar levels looks better and my HbA1c is going down.
How do you manage to balance the necessary obsession with food and counting carbs with a healthy attitude towards eating?
I’ve been seeing my dietician since 2009 and she referred me to a clinical psychologist that specializes in eating disorders. We determined that I am actually addicted to food. So it’s not anything specific and that is what makes it a little bit more difficult.
It has not been easy but support is really important. What I did was to create a group with my friends, and they are my accountability partners. So if I’m having a tough day, or I really just want to eat, and I don’t really know what I want to eat, I will check in with them. And they do the same if they have trouble.
And I obviously I still see my psychologist once a month, and I still work with a dietician. My husband plays a huge role because he helps keep me sane and he is my biggest support structure.
If someone you love is struggling with diabetes and an eating disorder, how can you help?
Sometimes all we want to do is help the people we love, but we should not impose our help on them. Because that is what happened to me. The person struggling needs to admit and accept that they have a problem. And when that happens, then you can step in and say, “Okay, let’s look at what we can do for you.” Sometimes we just need to vent , especially when it gets to a point where I can’t handle it.
And what also helps a lot is if you know someone try and get them involved in the community of people living with diabetes or even an eating disorder community, because speaking to other people who can relate and you can actually understand is helpful.
Would you rather listen to this information?
Here’s an episode of our podcast about it!
About the podcast guests:
Gayle Landau is a Registered Dietician, having completed her BSc ( Medical Honours) in Nutrition and Dietetics at UCT. She has gained experience from working in ICU, neuro- physical rehab, surgical and medical wards. Gayle cares for adults in her private practice, based at Wits Donald Gordon Medical Centre in Parktown Johannesburg.
She has completed the Centre for Diabetes (CDE) advanced course in Diabetes Care for Health Professionals. Gayle is affiliated to the colorectal unit at Wits Donald Gordon and has been accredited by EatFitSA.
Elré Clarence is 36 years old and has been living with Type 1 diabetes since 1986. She works as an operational agent at a travel agency dealing with everything travel.
Her hobbies include knitting, reading, drinking coffee at her favourite local spot, petting cats and spending time with family and friends.
What to read next?
Dealing with diabetes burnout: Dealing with diabetes burnout is complex. There is no “one solution fits all” because the experience isn’t the same for everyone.
What are diabetes complications?: Diabetes complications are one of those things none of us wants to think about… Having diabetes can be stressful enough without worrying about complications.
The diabetes diet: all you need to know: Explains portion control, carb counting and diabetes super foods in detail.