Warning signs of ED-DMT1

Medical professionals and researchers have identified the following warning signs that might be present when an individual with diabetes may also be developing an eating disorder:

• Changes in eating habits (typically eating more but still losing weight).
• Rapid weight loss or weight gain.
• Low self-esteem or preoccupation with body image, weight or food intake.
• Frequent urination, excessive thirst or high blood-sugar levels.
• Low energy, fatigue, shakiness, irritability, confusion, anxiety or even fainting.
• Purging behaviors (such as vomiting, excessive exercise or the use of laxatives).
• Discomfort with eating or taking insulin in front of other people.
• Hoarding food.
• Unwillingness to follow through with medical appointments.
• Recurrent diabetic ketoacidosis (DKA).

Please note this is not an exhaustive list! 

Communicating with a loved one

Have you recently recognized some of the common warning signs of disordered eating and/or behaviors in a loved one living with type 1 diabetes? Are you unsure of how to approach your loved one with your observations and concerns? We understand that this may be a very difficult and scary time for you. This is not an easy conversation to instigate, especially with someone you love. Watching someone you love slowly kill themselves can be frightening. You will probably experience feelings of distress, anger, guilt and confusion. No matter how much you want to help them, the person struggling with the eating disorder is the only one who can choose recovery.

Are you ready to approach your loved one with your concerns? Here are some important tips to keep in mind before you have that conversation:

Plan a time to talk. Set aside a time for a private, respectful meeting with your loved one to discuss your concerns openly and honestly in a caring, supportive way. Make sure you both will be free from distractions. 

Use “I” statements. Avoid placing shame, blame or guilt on your loved one regarding their actions or attitudes. Focus on using “I” statements; for example, “I’m concerned about you.” Try to avoid using “you” statements such as, “You just need to take your insulin.” 

Be prepared for negative reactions. Some ED-DMT1 sufferers are glad someone has noticed they are struggling. Others respond differently. Some may become angry and hostile, insisting you are the one with the problem. Others may brush off your concerns or minimize potential dangers. Both of these responses are normal.  

It’s okay if they’re not ready to accept help yet. If your loved one refuses to acknowledge that there is a problem, restate your feelings and the reasons for them, and leave yourself open and available as a supportive listener. 

Focus on feelings and relationships, not on weight and food. Share your memories of specific times when you felt concerned about this person’s eating behavior. Explain that you think these things may indicate that there could be a problem that needs professional help.

Make sure you do not convey any fat prejudice or reinforce their desire to be thin. If they say they feel fat or want to lose weight, don’t say things like, “You’re not fat.” Instead, suggest they explore their fears about being overweight and what it is they think they can achieve by being thin

Do not criticize their eating habits or their diabetes management. People with eating disorders are trying to be in control. They don’t feel in control of their life. Trying to trick or force them to eat can make things worse.

Avoid the following comments and language when speaking to your loved one:

“Are you making any progress?”
A question like this can trigger a defensive response. The timeline for healing is different for everyone.

“Just take your insulin.”
If only it were that easy. There are deeper emotional issues preventing someone with ED-DMT1 from taking their insulin. An eating disorder is a mental illness.

“What have you eaten today?”
Someone living with an eating disorder may not receive this question as a well intended inquiry. They may feel inclined to be dishonest by providing you with an answer they know you want to hear. Every meal can be a battle for someone in early recovery, and it can be exhausting to keep talking about it after it’s over.

“You look so healthy! You were always too thin before.”
When someone is struggling with an eating disorder it’s important to avoid ANY comments on their appearance. Even if you think it will sound encouraging and provide a sense of accomplishment – don’t do it.

“You’re going to kill yourself.”
Eating disorders are classified as a mental illness. No one chooses to become trapped in an all-consuming addiction. No one chooses to watch their life and relationships slowly fall apart. Every single person living with type 1 diabetes is aware of their mortality, and the associated risks of improper health management. A statement like this is not helpful in any way.

“You obviously are not trying to get better if you are just getting worse.”
Recovery is a long process and the person is going to have slips and relapses; you cannot expect the person to recover overnight. Relapses are a normal and unavoidable part of recovery.

“Boy, you ate a lot today.” or “You were certainly hungry today.”
After a comment like this, the person is going to spend the next few hours or days obsessed with the amount of food they ate and whether it’s making them fat. There is no reason to make any comments about how much they’ve eaten.

Relapse prevention strategies

Two steps forward and one step back. Relapse is a natural part of the recovery process. Even after receiving the initial treatment, recovery really starts to happen for people battling diabulimia when you get back into the real world. The blood sugar monitoring, stress, having a job and still taking care of your diabetes, dating, etc. are all factors that can trigger anxiety and a potential relapse. Here are some important things to keep in mind when you’re struggling with feeling overwhelmed in your journey towards recovery from diabulimia. 

1. Nothing is permanent. While embracing recovery from diabulimia, you will have some physical issues: temporary weight gain (bloat), possible edema, electrolyte imbalances, nausea, constipation, dizzy spells, and insomnia. It’s not forever. Everyone goes through this! Think of it like detoxing off of drugs or alcohol. You have to be patient during the first few months of recovery, your body is slowly coming back to life and has a lot of catching up to do. Emotionally you may feel depressed, anxious, angry, etc. All those emotions you were hiding/numbing will come back fast and furious, there is no way to avoid the feelings you have, allow them to be present, allow them to move through you and remember that just like withdrawal from drugs, it passes. It’s not permanent!
    
2. Know your triggers. Make a list of your triggers. There are internal triggers which include things like shame, boredom, anger, fear and anxiety. There are also external triggers including things like scales, family members, financial problems, weather, unexplained high and low blood sugars, etc. There is no way to avoid some of these triggers, but being aware of them may lessen your anxiety and help you accept that things don’t always go as planned, we just have to try to do the best we can.
    
3. Connect with others who have been there. You’re not alone! Check out the main resources page for information and online support groups. We also have a message board and a growing community of individuals ready and willing to lend an ear or a voice whenever it might help.
    
4. Make a list of reasons you want to recover from Diabulimia. And after you make your list, put it up in a place where you can read it often!
    
5. Recognize when you need to slow down. Living with type 1 diabetes is challenging enough, but living with type 1 diabetes and an eating disorder is twice as challenging! It’s hard to accept sometimes that your body doesn’t run the way a “normal” person’s does. A bad low or high in the morning can make you feel sluggish or anxious for the rest of the day and it’s okay to allow yourself to move a little slower at work, or get the errands done a little later once you’re feeling better. This may seem obvious, but by recognizing depression, anxiety, or physical strain and accepting that you can’t feel 100% all the time, every day, you can take preventative steps before a relapse occurs in your diabetes regimen.
    
6. Keep a journal. If you put your thoughts out on paper, you will begin to notice patterns. If it’s on paper, you can’t deny it. Recovering from diabulimia will bring up feelings of joy, fear, hope and many other strong emotions. Writing them down helps you release those sometimes very overwhelming feelings.
    
7. Attend regular therapy appointments and keep in regular contact with your sponsor. We need help and that is one of the hardest things to accept and ask for. No matter how difficult it may be to share what you’ve been going through, you should consider getting a therapist. If you can’t afford therapy, go to a 12-step group and get a sponsor. This is so extremely important if you’re in relapse mode or even just in recovery.
    
8. Develop healthy coping skills. Make a list of ten things that are healthy coping skills. These can be things like a hot bath, knitting, writing, drawing, crochet, taking a walk, an afternoon nap, etc. Here’s the important point: use them when you’re struggling!
    

Practice acceptance. Life is hardly perfect. We are hardly perfect. Yet we tend to expect it to be, and when something goes wrong, we crash and burn. It’s not our fault, but we assume it is. We assume that we must either punish ourselves or numb the pain somehow. Punishing ourselves and numbing the pain will not make a situation go away. All you are doing is avoiding the truth.