Welcome to the 3rd and final post in my 3 part series on Type 1 diabetes. I am going to put a trigger warning on this article, which is something I have not done in the past but I think I should here. I will be talking about some of the techniques I have seen in the past to omit insulin as well as other eating disorder type behaviours. I do think it is important to mention these in this article however please stop reading here if it could bring up too much for you.
In this series started off talking about language at diagnosis and how that could be internalized to create body image issues. This was followed up by an article about carbohydrate counting and the focus this puts on food. Finally I am going to write about Diabulimia. To be honest this is the most difficult one for me to write about as I do not think that are any straight answers with regards to prevention or treatment. There are however many questions that I think need to be asked and thought about as we see more people struggling with an eating disorder while living with Type 1 diabetes.
Diabulimia is a term that has been used often in the diabetes world to describe someone who is omitting insulin to purge calories. It is not a term that is found in the DSM IV (Diagnostical and Statistical Manual of Mental Health Disorders) however it is found all over the internet and in books when talking about eating disorders in combination with Type 1 diabetes.
I have read in the past that women with Type 1 diabetes are 2.4 times more likely to have an eating disorder than woman without Type 1. They are also 1.9 times more likely to show chaotic eating behaviours. This stat alone should make us concerned about how we work with individuals with Type 1 with regards to their bodies and eating behaviours.
To put it simply Diabulimia means to purge calories by omitting insulin. This term in of itself is tricky, not everyone who omits insulin has an eating disorder nor does everyone, who has type 1 and eating disorder behaviours, omit insulin. It takes a fairly detailed assessment by someone who has a strong background in both to determine if a person is experiencing diabulimia and this is where the first issue shows up. There are not a lot of clinicians that have any experience in both let alone a strong background. So what are we supposed to do? Hope they figure it out?? Refer to a new team?? Hire me?? (well if your centre is on a beach today I think that would be a fabulous idea!!)
Let’s start with the omission of insulin. There are so many reasons for missed doses of insulin that are not related to weight loss, people really truly do forget. Honestly. Have you ever left the house and questioned whether you remembered to turn off the stove or brush your teeth? Life is busy and the brain is going in a million different directions and in my clinical experience insulin is often not the top priority for teens- no matter what the adults in their lives say. So you would need to determine whether the omission of insulin is to manage weight or if it is one of the million other reasons for missing doses.
Manipulation of insulin for weight loss is likely one of the very first things a person learns at diagnosis. No or little insulin means weight loss hence why they lost weight prior to being diagnosed. Starting insulin meant weight gain. It is not a very huge step from seeing this at diagnosis and using it later in life. I have sat across from clients that have outright told me that they manipulate the doses for weight loss. I have seen HgA1c's (a test that shows what average blood sugars for a 3 month period) skyrocket in the months leading up to prom or a wedding. (A whole other post on sizing in the fashion industry could be written here) Insulin omission is also a very simple way to purge (meaning eliminating calories by excessive means, Insulin takes glucose from the blood stream into the cells for energy. Without insulin glucose gets stuck in the bloodstream or a small portion eliminated in urine) People are able to eat fairly normally in front of family and friends. There is not the tell-tail going to the bathroom after eating to vomit or the excessive exercising that can be viewed. An individual could simply skip the dose of rapid acting insulin that should be given for the meal, pretend to give the dose by shooting it in the sink, push the buttons on their insulin pump but not deliver the insulin or even decrease the dose. I have found that most parents or loved ones would ever check the dosing because there are no bright red flags for them to. I have even learned from clients over the years how to use other liquids to "trick" the meter to showing good blood sugar numbers. All this to say that an individual could be doing this for years before it is picked up. By then the behaviours are very normalized and entrenched.
Not only will individuals have the effects of eating disorder behaviour (potential for restrict/binge cycles, depression, negative body image, increased isolation...), they will have the side effects of high blood sugars (increased urination, increased thirst, fatigue, irritability...). This is not a combo that makes treatment easy. Do you start with the eating behaviours themselves, the omission of insulin and adjusting of insulin or do you dive right in with both. This is where I have no definite answer and I think you need to follow the lead of the client. As I find myself saying over and over, we need to bring the body into the room. There is likely a significant amount of body hate in this particular group of clients. Their bodies have "let them down" by having a pancreas that does not function as it should. The have endured (sometimes years) of appointments where they are weighed and their insulin sites assessed. There is a strong probability that they have not found joy in being in their bodies. As clinicians we need to be aware of that. Aware of the story. Sit with them and let them tell you the story of their body, their experience with diabetes, their history. It is only after that do I think that you can work as a team (the individual, you and any other members you can get involved) to figure out where to start. Sometimes its having someone else figure out all insulin doses so that the individual does not have to count their food. (Imagine trying to quit "dieting" or being obsessed with what you eat and needing to count the carbohydrates of everything you put in your mouth!) Sometimes its just getting them to give a smaller dose at each meal to start the habit of injecting again then working their way up to the appropriate doses. (FYI I think most, if not all, Endo's will hate me for saying that....#sorrynotsorry....as in the end I think it will have better long term results). Sometimes it is fighting the rest of the team like hell to realize that this is a slow process and threatening future amputation does not help (I have never found threatening someone helpful and I have seen many many professionals try. When you tell someone not to touch the red button that says "BOMB"...they usually touch the button..well I would).
So if treatment is hard and tricky is there any way to avoid it? Not likely as eating disorders are seen in most populations, i all genders and all ages. But can we decrease the risk or spot it sooner? I think so. (Read post 1 and 2 of this series..lol) End body shaming and diet talk at your clinic and in your home. Talk to others about what they are feeling and thinking about themselves. Notice if the rapid acting insulin is not running out as much as it used to. Be aware if someone is losing weight-even if it appears to be intentional. In reality a kid/teen should not be losing weight they should be growing! Talk to your diabetes team about weigh in's for appointments and how is makes you or your child feel. Be aware of....well be aware of everything. Diabetes demands attention all the time. 24hrs a day 7 days a week. I think this is part of the reason that the little changes that can lead to diabulimia type behaviours can go unnoticed.
I have said before and I will say it again. We live in the stew of diet culture. It is thick and hard to move around in. For a person with diabetes its like they are stuck between a potato and a carrot in this stew(not my best metaphor I know but follow me) which makes it even harder to move around. They have the added stress of a chronic disease that is not entirely visible but never gives them a break and makes them focus on their bodies and their food much more than the average person. It is hard.
There are no gold standards for treatment in diabulimia. There are not a lot of studies on it either. But I think if we take the stance of body neutrality at diagnosis and assist in developing a positive relationship with all foods the rates of diabulimia may lessen or the behaviours may be caught sooner and therefore less ingrained before helped.
I hope you enjoyed this little series of posts. I may try this again sometime...
Until next time be Unapologetically you, while I be Unapologetically Me...