This content originally appeared on Beyond Type 1. Republished with permission.
By Ginger Vieira
“Diabulimia” — also known as ED-DMT1 — is a life-threatening eating disorder that involves skipping or restricting your daily insulin doses as a person with diabetes. While it mostly applies to those with type 1 diabetes, some people with type 2 diabetes taking insulin may engage in diabulimia behaviors, too.
Diabulimia can be fatal by putting a person in a nearly constant or recurring state of diabetic ketoacidosis (DKA) through severely low insulin levels and dangerously high blood sugar levels.
While those who engage in diabulimia believe it might help them lose weight, diabulimia does not lead to real weight loss. It is extremely dangerous, life-threatening, and can require a great deal of support to reach recovery by taking the amount of insulin your body needs to maintain safe blood sugar levels.
Here, we’ll look at what you should expect when you work to reach recovery from diabulimia.
The Decision to Recover Means Letting Go of Control
“When you make the decision to recover from any type of eating disorder, you also make the decision to surrender a lot of control,” explains Asha Brown, founder of We Are Diabetes. “And control is the whole reason, for most people, that we develop any sort of eating disorder.”
Brown has been coaching people with type 1 diabetes through recovery for over 10 years after reaching and sustaining her own recovery from diabulimia.
Starting your journey to recovery also means acknowledging what else is going on in your life or the thoughts that you’re struggling with.
“Usually there are other parts of life that we can’t process or understand, or just can’t sit with,” explains Brown. “We feel like we can’t control it, so we develop habits that help us believe we are in control. In some cases, it may be a reaction to having diabetes—this huge thing you cannot control which might also be causing a lot of anxiety.”
Letting go of that effort to control something is often the hardest step, says Brown, who went to an eating disorder recovery clinic to begin her recovery journey. While it sounds easy, it’s often the first place where people quit their recovery journey.
“For me, having to let go and take a full dose of insulin based on the number on my glucose meter—that was scary,” says Brown. “I had to let people help me. I had to surrender. And it was one of the best decisions I ever made.”
As someone who would fight against being told what to do, Brown says she began to embrace the structure and routine of taking her insulin.
Expect an Immediate Boost in Your Energy + Strength
Getting support at the start of your recovery is also critical because of the physical and emotional effects of taking a healthy amount of insulin again.
“A good support team should help you bring your blood sugars and A1c down very gradually, not immediately,” says Brown.
After months or years of skipping insulin and enduring dangerously high blood sugar levels that leave your body feeling sluggish, numb, dehydrated, and starving, the experience of taking your insulin again will likely feel incredibly energizing during the first two weeks.
“You will feel really good during those first couple weeks because you’ll be eating regularly, getting rehydrated, your brain will get the glucose it needs to function, and your metabolism will be getting what it needs to burn normally,” says Brown.
You may feel a sudden burst of energy and a renewed sense of feeling healthy and strong as your body starts getting what it needs.
Expect the Potential Onset of Diabetes Complications
While you may feel physically boosted by taking the insulin your body needs to function, this phase of recovery can also reveal and even spur on some of the damage that your body has endured from restricting insulin.
“The longer you’ve been skipping your insulin, the more damage you’ve also been doing to nearly every part of your body—including your eyes, toes, kidneys, etc,” explains Brown. “As your body adapts to safer blood sugar levels, getting a healthy amount of insulin, you may also start to feel and notice the damage that occurred during the years of skipping insulin.”
“Your whole body comes to life,” says Brown. “And then you start to realize how much you were killing it by restricting your insulin. And this is also when all of the complications start to reveal themselves, including bleeding blood vessels in your eyes from retinopathy, loss of sensation in your toes and feet from neuropathy, and digestion issues from gastroparesis.”
Bringing your blood sugar and A1c down gradually, Brown reminds, is a critical part of reducing the full onset of these complications related to chronically high blood sugar levels.
“You may feel really uncomfortable for a while during this part of recovery,” she adds. “It may continue for six months, maybe a year. You have to push through it, be patient.”
The complications themselves, of course, do not fully recover, but the sooner you get treatment for things like retinopathy—and continue to take your insulin—the better chance you have of preserving your vision and preventing further damage.
Expect Some Temporary Water Retention + Swelling
Throughout the months or years when you were restricting your insulin, your body was severely dehydrated because it was constantly trying to flush out excess glucose through your urine.
(This is also why you may have experienced frequent yeast infections—excess sugar in your urine feeds the growth of yeast.)
When you start taking healthy amounts of insulin again, your body will hold on to more water than normal at first.
“The extra water is a critical part of helping every cell and system in your body come back to life,” says Brown.
Healthy blood flow—which carries oxygen to every blood cell in your body—helps your organs, tissues, cells, blood vessels, etc. get the nourishment they need in order to heal, grow, and function.
The mental impact of that swelling and water retention can be stressful and scary for a person recovering from an eating disorder.
“As much as I can tell you this is just water weight—and it’s temporary as your body rebalances—you’ll want to scream and run,” says Brown. “It can feel awful mentally, and you’ll want to run away, run out of your body.”
To reach recovery, Brown says you truly have to get through this temporary phase of swelling and emotional pain of feeling ‘puffier’.
“It takes a very brave and determined person,” says Brown. “And plenty of support.”
Expect a Few Slips + Bumps in the Road to Recovery
Your path to recovery will likely include a few bumps or slips—what some might refer to as a relapse.
“I prefer the word ‘slip’,” says Brown. “I don’t like the word relapse because there is no single solid definition when applying it to something like diabulimia. It can look different for every individual because we each have our own habits, our own symptoms and behaviors within diabulimia.”
Brown says the true definition of a slip or relapse means you stopped doing something you committed to doing.
For example, you might start binge-eating or severely restricting your calorie intake but still taking your insulin. Maybe you start hiding food or avoid eating in public again. Or maybe you fully engage in insulin restriction, binge-eating, and dangerously high blood sugar levels for a week or several.
“You don’t recover from an eating disorder in a perfectly streamlined route,” says Brown. “And it’s important to know that because a slip or relapse can come with a lot of shame. Referring to it as ‘just a slip’ can feel far less dramatic and severe than the word ‘relapse’.”
For many, it’s an inevitable and messy part of the path to recovery.
“There’s absolutely no way to avoid this,” says Brown. “You will have great plans and great intentions. Those plans will work some days and then they will not work other days. You will feel defeated and angry and use coping behaviors like you used to. And then it’s up to you to decide how long you wanna do that and how long you want to feel bad and angry at yourself.”
And then, take the next best step forward to get yourself back on track in your recovery.
Create a “Relapse Prevention Plan” With Your Support Teamdiabulimia
Just as it’s important to anticipate diabetes burnout (because who wouldn’t get burnt-out doing this 24/7), it’s critical to anticipate a potential relapse in your path to recovery from diabulimia.
We Are Diabetes offers a few tips when creating your own relapse prevention plan:
Set a timer for five minutes when you feel the urge to engage in diabulimia behavior. This five-minute window gives you time to sit with what you’re feeling, identify what’s triggering the urge to engage in diabulimia behavior, and talk yourself through it. Sometimes simply doing something else for five minutes can help, too. Like going for a short walk, cuddling a pet, calling a friend, folding your laundry (we’ve all got laundry to put away), or dancing in your kitchen to a song you love.
Explore and acknowledge what you’re feeling. Most likely, something else is going on in your life that is triggering the urge to reach for your most familiar coping methods. Instead, take a closer look at what you’re feeling! Whether you write them down, record a voice memo on your phone, or text a friend, simply getting it out of your head can do more than you’d expect. Talking yourself through it can help calm what you’re feeling or give you enough distance to feel okay with whatever else is going on. Take a deep breath and shine the light on the real issue—then ask yourself what might really help instead of those old coping methods you’re trying to shed.
Give yourself permission to act on the urge—but not right now. Another method of waiting it out is to say to yourself, “Sure, you can engage in eating disorder behavior soon, but not right now.” The 30 minutes or few hours you wait can make all the difference in letting those feelings pass.
Help someone else. If you’re stuck in a cycle of anxiety, try redirecting that energy by doing something helpful for someone else. Maybe it means visiting your grandparents, helping a friend manage a houseful of kids for a few hours, or picking up litter at your local park. The distraction can help you break free from your own emotional cycle and reset.
“You’re gonna have days where you feel like it’s too hard,” says Brown. “You’re gonna get anxious that water retention and swelling will never go down, for example. There’s a lot of emotional pain and physical discomfort that can come along the path to recovery. There’s an urge to numb out that pain of real life by engaging in your eating disorder, but you have to learn to talk yourself through it and see that it passes. That you’re still okay.”
In addition to working with a recovery specialist or rehabilitation center, Brown offers coaching support for anyone in the process of recovery at We Are Diabetes. The We Are Diabetes Mentor Program also allows those who’ve reached recovery to support others in their own recovery.