This article was designed to avoid triggering disordered eating behaviors in readers. It’s intended to be a safe place to read about and think about your own relationship with diabulimia and your own path to recovery.
Three very courageous women living with type 1 diabetes are here to share what life in recovery from diabulimia looks like, what it took to get there, and what they do each day to protect that recovery.
Are you facing a battle with diabulimia? You are not alone.
“The term “diabulimia” (also known as ED-DMT1),” explains We Are Diabetes, “has often been used to refer to this life-threatening combination and the unhealthy practice of withholding insulin to manipulate or lose weight. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors, or they may only manipulate their insulin and otherwise have normal eating patterns.”
But life after diabulimia? Life in recovery? Well, that’s a different story. Life in recovery — a life in which you take your insulin daily — can be a very full life.
A life full of fun, pride, holiday parties with friends, your children who drive you nuts, going to CrossFit during your lunch-break, a career that serves others and serves you, love for yourself, love for your friends, real relationships with husbands and wives and boyfriends and girlfriends and family and friends, and of course, a lot of gratitude for the body you live in.
Life in recovery from diabulimia can be a full life.
Meet Asha Brown: My Diabulimia Recovery
- Diagnosed with type 1 diabetes at age 5
- 33 years old today
- Battled eating disorder/diabulimia from age 12 to 23 years old.
- Founder and Executive Director of We Are Diabetes: where she works with families and patients struggling with eating disorders and type 1 diabetes. She uses her personal experiences with ED-DMT1 to offer hope and support to the thousands of individuals struggling with this deadly dual diagnosis. She speaks regularly at conferences for healthcare professionals and establishes relationships with eating disorder treatment programs and diabetes organizations across the county to help connect people with appropriate care.
- She lives with her husband Danny in MN, with their two extremely opinionated cats, Taurus and Fredrik.
- Personal quote: “Your eating disorder is lying to you.”
“Throughout the decade of my eating disorder, my blood sugar was so high at least 85 to 90 percent of the time that my brain was simply not working right. I was in a fog all the time,” says Asha.
In addition to feeling physically numb to everything, Asha says she didn’t feel any type of emotion very strongly either.
“Not anxiety, not fear, not a sense of right or wrong,” she explains. “I made a lot of really impulsive decisions during those 10 years, and I never considered the consequences.”
Looking back, and through a great deal of self-reflection, Asha can pinpoint the destructive body images issues and disordered eating issues that she actually learned from her mother.
“Through her example, she taught me a lot of really destructive ways of dealing with negative feelings about your own body, and she used food a lot to deal with her emotions.”
In addition to the toxicity around food in her own home, Asha adds that the guidelines outlined for diabetes management by the American Diabetes Association in the early 90s contributed significantly to a severely unhealthy relationship with food.
“I was constantly being encouraged to eat Angel Food Cake because it was so low in calories and carbohydrates, and to ‘sugar-free treats’ like JELLO if I was hungry. I should have been learning how to eat a piece of real chocolate cake at a birthday party and learn how to dose insulin around that cake. Instead, I was encouraged to eat ‘safe’ foods and ‘free’ foods freely, and ‘diabetes-friendly’ foods. I was not being encouraged to eat like a normal person, I was encouraged to eat like a diabetic.”
The combination of an addictive personality combined with dangerous examples being taught to her by her own mother was like adding gasoline to a fire when placed on top of type 1 diabetes and the constant obsession with food that comes with diabetes management.
Asha’s Breaking Point
“Before running a non-profit (We Are Diabetes), my entire life revolved around being a professional actress — since the age of 5. But in 2008, during the year before I went to Melrose for treatment for my eating disorder, I was working at one of the most nationally recognized theaters in the country in Minneapolis, and I was cast in a musical, doing nine shows a week.”
But the truth was, Asha says, “I could barely handle it.”
“I was falling apart. My eating disorder was so bad at that point that I missed at least three shows one week. I had become an unreliable actor — and in the world of performing arts, you can’t just not show up. You have to be reliable.”
During the three shows she missed, Asha says she “played the diabetes card” to justify to her director and colleagues why she couldn’t perform. Blaming it on difficult blood sugars and other vague diabetes issues in an effort to hide that her extreme eating disorder behaviors had left her without the energy and mental strength to perform.
After that show closed, Asha had already been in cast in another play that was about to start rehearsals, but the stage manager essentially fired her, telling her they were “going to go in a different direction” and had recast the part with someone else.
Asha says she knew instantly it was because he had heard from her previous stage manager how unreliable she had become as an actress.
“I can’t even express the shame, anger, and embarrassment that flooded over me, because I realized that this was not a secret anymore, and I was not in control anymore. And I was ruining the most important thing to me in my life at that time,” says Asha. “I ruined it because I was choosing my eating disorder.”
Despite being newly married, the depression and shame that came with the loss of her role in that theater production led her to contemplate suicide.
“I was sitting with my computer one night, trying to figure out what was the easiest way to die…that’s when I realized I needed help.”
What Asha Does to Protect Her Diabulimia Recovery
During the first years of her recovery, Asha made a commitment to herself: omitting her insulin was simply no longer an option she could choose. She forbid herself from engaging in that particular aspect of eating disorder behavior.
“That doesn’t mean I wasn’t still struggling,” she says. “I struggled for the first three years of my recovery on a daily basis. I struggled with reaching for those other habits and those other beliefs and thoughts in my head that fueled my eating disorder.”
But she says a key component in those early years was remembering that very firm choice that she would not break the commitment she’d made to herself: withholding insulin was no longer an option.
She also broke the cycle when she did slip into other eating disorder behaviors. Instead of letting one behavior lead to another and another, she stopped herself quickly after the first and made herself choose good habits, resisting the urge to get sucked back down that destructive path.
By the 6th year of her recovery, Asha says the day-to-day struggle was gone, but her new level of self-awareness and awareness of the real world happening around her brought another challenge.
“I recognized how much I had missed out in my life because for an entire decade, my life was on hold and my brain was numb. It was a struggle to accept how behind I was emotionally as an adult because of my eating disorder.”
Fortunately, Asha kept focused on her recovery, and “catching-up” emotionally was another hurdle she’d overcome.
“I’m in my 10th year of recovery now, I would say that by year 5, I was not feeling any sort of triggering or eating disordered thoughts and beliefs or habits,” says Asha.
Today, however, Asha says the one thing she does still struggle with is the overall desire to “numb-out” to the world around her — something the dangerously high blood sugars of diabulimia enabled her to do.
“When life gets hard, I just want to shut-down and numb-out, which is really the essence behind why anyone with any type of addiction chooses those addictive behaviors. But you don’t get to do that in real life, you can’t just shut-down and numb-out. We’re alive! We’re humans, and we don’t get that choice unless we want to cheat our life or cheat ourselves.”
But Asha has found other ways to deal with those urges.
“When I do feel that urge to numb-out, I acknowledge it by simply thinking it through, like ‘Ohh, I sure would like to do this or that right now to numb-out’…but then I recognize that while it would feel good for a moment, I will pay for it right afterward.”
There’s an idea, says Asha, that people with eating disorders have around those destructive habits, that engaging in those behaviors will feel beautiful and safe and healing.
“Your eating disorder is lying to you,” she says. “I have to think about the fact that it won’t feel as magical and safe as my eating disorder tells me it will be. I have to remind myself that I am always going to be an addict, and will always need to put myself first. Always making choices that protect my recovery.”
Today, she says there are still days when it’s a struggle to put herself first, to honor her need for self-care, but she makes those good choices every day.
“I practice what I preach,” says Asha, “but that doesn’t mean it isn’t difficult. I do it every day, no matter what, but it isn’t always the easiest choice to make.
For those still deeply struggling with an eating disorder and wanting to get on a path to recovery, Asha offers two golden nuggets to consider:
- “At some point, you will need to understand and accept that doing the same thing over and over again is going to give you the same results. If you continue to believe that making those same choices, again and again, is going to give you a different result that the life you’re living right now, you need to know that is never going to happen. Your eating disorder is lying to you.”
- “And when it comes to any aspect of life, any decision you make whether its which friends to hang out with or what things you say ‘Yes’ to or where you work…you need to ask yourself ‘Will this decision HELP or HINDER my personal recovery?’ I still ask myself this question regularly.”
Meet Noor Al Rahami: My Diabulimia Recovery
- Diagnosed with type 1 diabetes at age 5
- 30 years old today
- Diabulimia behaviors began at age 12
- Nursing student, and an avid volunteer for diabetes organizations, including ADA, JDRF, CWD, CarbDM, & Sugar Mommas
- Wife, and a mother to 3-year old twin boys, one dog, and one cat
- Personal quote: “I met so many people of different sizes who were healthy, who had happy relationships with their parents, and were achieving their dreams. That’s when I realized everything I was missing out on because of diabulimia.”
“I lived in constant fear and conflict,” says Noor of the years she spent fighting against diabulimia. “I was afraid of being ‘fat; but also of dying. I was afraid of my parents finding out and stopping me, but also of them finding out and losing their trust.”
Noor remembers clearly wanting to be healthy and happy but found her fear of losing control over how her body looked if she were to take care of diabetes differently was too overwhelming.
“The the most important thing to me was that I was skinny,” she adds.
“I grew up in the middle east where a huge emphasis is put on a female’s physical appearance and our weight; if you were not skinny the chances of you getting married or finding a partner is slim.”
While in other countries, commenting openly on a woman’s body-weight to her face is considered disrespectful, it was remarkably normal where she grew up.
“And as a kid, I just loved food, and was always thinking about food.”
Noor’s Breaking Point
Noor fell into a diabetic coma for five straight days due to a low blood sugar of merely 79 mg/dL.
“My body was so used to being so high all the time that a 79 mg/dL could put me in a coma,” explains Noor. In other words: her body had acclimated to extremely high blood sugars during her years of limiting her insulin that it couldn’t function properly at a “normal” blood sugar level wither.
But when she woke up from her coma, she knew she wanted to change her life.
“Except I didn’t know how, and I was still afraid of my weight changing,” she says. “On the other hand, I knew I didn’t want to die.”
The first steps she took towards recovery included carefully adjusting her insulin doses to bring her blood sugars down gradually to a healthier level. While she says they weren’t “where they needed to be,” they were far safer and healthier than where she had often been prior to her coma.
And then she signed up for a Friends For Life conference in Orlando, Florida specifically for people with type 1 diabetes.
“I met so many people of different sizes who were healthy, who had happy relationships with their parents and were achieving their dreams. That’s when I realized everything I was missing out on because of diabulimia.”
Unfortunately, Noor says that when she began her path to recovery, she was living in the Middle East where there wasn’t specialized care for any type of eating disorder, let alone something as specific as diabulimia. Fortunately, she was able to see a therapist to work specifically on self-esteem and body-image issues.
What Noor Does to Protect Her Diabulimia Recovery
All the help in the world didn’t matter until Noor let her parents become part of her team in the battle against diabulimia, and that’s a crucial aspect of her continued life in recovery, too.
“I also needed to remind myself (with the help of my family) that I am enough, and my body is an amazing thing that I owe so much to.”
Noor says at a certain point, she also realized that in order to one day have children, taking care of her diabetes was absolutely critical.
“Today, working out makes me feel strong and happy about what my body can accomplish,” says Noor, taking the focus off just the appearance of her body.
“My kids and husband are a constant reminder that I need to take care of and love myself, so I can take care of them, and love them, and be a positive role model, and a good mom and partner. I owe it to myself and them to be healthy, happy and comfortable in my own skin.”
Despite her success in caring for her family and taking care of herself on a daily basis, Noor says the temptation to engage in diabulimia behaviors is always present and always something she will need to be mindful of.
“But there is no way that I can ever go back to that kind of life,” Noor says firmly.
The memory of how painful, miserable, and limited life with diabulimia was is strong enough to keep Noor focused on her life in recovery that is filled with far more joy.
“The burden, pain and struggle diabulimia brings is much worse than me feeling heavier than the model on the cover of a magazine. I have moments where I do feel defeated weight-wise, but I take a step back and remind myself of all the amazing things my body is capable of doing.”
Despite that she never engages in eating disorder behaviors today, Noor says she still feels like a work-in-progress and knows that’s a good thing.
“I still work with a nutritionist who is specialized in eating disorders. That helps keep me accountable and supports me in my powerlifting goals, too. I really want to compete someday so he helps me reach my nutrition goals without triggering eating disorder behaviors.”
And of course, she can look at her healthy, beautiful twin boys to remind her that choosing good things for her diabetes management is worth it.
“I remind myself of who I am on the inside: caring, compassionate, kind, giving, and I am more than the number on the scale. If anyone has a problem with that and will judge me for it, then so be it — it’s their problem, not mine.”
Noor knows her husband’s support and love for her also has no bearing on her body weight.
“I have an amazing husband who loves and supports me no matter what and the best family and friends I could ask for. One of my biggest joys in life is helping people, and if I don’t take care of myself then I can’t help anyone else.”
Noor says, for those early in their pursuit of recovery, it’s a daily effort.
“Reflect every day. Remind yourself of all the hard work you put into your life each day. You are more than the number on the scale; you are loved and worthy of love. Be kind to yourself. And remember, it’s okay to ask for help.”
Meet Kathlin Gordon: My Diabulimia Recovery
- Diagnosed with type 1 diabetes at age 7
- 42 years old today
- Battled diabulimia from age 17 to 38 years old
- Registered Dietitian (RD) and Certified Diabetes Educator (CDE)
- Mother to one daughter (diagnosed with type 1 at age 2), and 3 cats
- Personal quote: “I love Asha Brown.”
“Before my recovery, I was hateful,” says Kathlin. “I had a chip on my shoulder and always felt judged. I was paranoid that people were staring at me, calling me ‘fat’ in their minds, and questioning my existence.”
Diagnosed with type 1 diabetes at age 7, Kathlin says it wasn’t until she was 17 years old when disordered eating behaviors started to develop.
“The launch of my diabulimia stemmed from 2 places. First, my doctors and my dietitian always reminded me that less insulin would result in weight-loss. So instead of waiting for a reduction in insulin by my doctors, I did it myself.”
Kathlin says she felt constantly nagged and harped on by her doctors at every visit to lose weight.
“Secondly, the ignorance of the public and the common belief that ‘diabetes is a fat person’s disease’ really triggered me to ‘show them’ they were wrong.”
Kathlin’s Breaking Point
“My breaking point was realizing that my daughter watches what I do,” says Kathlin. “She learns from me. According to her, I am her ‘hero.’”
Kathlin also knew that without recovery, as a mother she would appear tired and sick on a nearly daily basis, and couldn’t bear the idea of her daughter growing up to think that was normal, and her own destiny.
“I participated in a diabulimia study at Duke University,” explains Kathlin. “The study would call me every hour and ask questions that I was to answer with a score of 1 to 5.”
The questions included specific details related to food and emotions. Despite the simplicity and gentleness of it, Kathlin says it was pivotal in helping her recognize her own anger, and how her diabulimia was a part of managing that anger.
While completely turning her life with diabetes around, at the age of 41 years old, Kathlin was faced with the need to amputate the lower half of one leg. However, she’s determined to ensure that her daughter continues to see strength in living with diabetes.
“Asha Brown also had a tremendous influence on my recovery,” adds Kathlin who never sought treatment from an eating disorder facility or enrolled in any programs beyond the study at Duke University.
While she says she felt like she battled her diabulimia largely on her own, she did eventually seek support from resources including a psychiatrist, antidepressants, a dietitian, and changing to an endocrinologist with a specialty in supporting patients struggling with diabulimia.
What Kathlin Does to Protect Her Diabulimia Recovery
“I avoid scales and mirrors,” says Kathlin firmly. “I focus on what I did today that was ‘amazing’ or something I was proud to accomplish. And I especially love reflecting on lives I have changed, hearing success stories of my patients.”
Today, Kathlin says that on a scale from 1 to 10 (10 being the hardest), the effort it takes her to stay on this path of recovery is about a 2.
“To stay in recovery, I have to ground myself and think ‘like a dietitian,’” says Kathlin. “In other words, stay science-based and realistic when it comes to food choices.”
Between wanting recovery and feeling like she was truly in recovery, Kathlin says it took about 3 years of trying, slipping back, trying again, and slipping back.
Although, it’s quite possible Kathlin is being modest in the fact that on a daily basis she is choosing a life of recovery with every action and every thought she allows to affect her decisions around diabetes management and nutrition.
She’s also very determined to ensure her diabetes patients don’t find themselves facing the same struggling with weight, shame, and anger.
“I educate my patients and I never weigh them, because life is not about numbers,” says Kathlin, challenging the all too common approach to healthcare most of us experience.
“I don’t want to be judged on my weight, and I do not want anyone to feel that they are measuring their own self-worth based on a number.”
In your own path to recovery, Kathlin says it’s crucial to celebrate the “small” stuff.
“Go slow. Say something good about yourself every single day. You are not alone in this fight.”
Taking Steps Towards Your Own Diabulimia Recovery
If you or someone you love is struggling with diabulimia, you can reach out to WeAreDiabetes and begin talking about where you are now and where you hope to be. You are not alone.
Mentor Training Program: “The We Are Diabetes Mentorship Program is a FREE peer mentoring service available to individuals committed to recovering from ED-DMT1 (dual diagnosis of type 1 diabetes and an eating disorder. Our Mentors provide safe, confidential support as they work to encourage and guide their mentees towards their goal of solid and permanent eating disorder recovery.”
FREE Resource: “The We Are Diabetes Recovery Toolkit was created for any individual working towards recovery from ED-DMT1 (sometimes referred to as “diabulimia”). This unique resource addresses the most common questions and concerns about the recovery process for ED-DMT1 and offers important information on seeking proper eating disorder treatment care.”
“The We Are Diabetes Recovery Toolkit is also a helpful resource for healthcare providers and concerned family members; as it provides a great deal of explanation and insight to the concerns that a type one diabetic with an eating disorder may be struggling with.”