A heads up – this is going to be a heavy post. It is undoubtedly controversial. It is probably triggering to some. I completely understand if this is a topic you want to avoid, and I respect your decision if you do not want to continue reading.
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If you or someone you know is struggling with disordered eating and diabetes (any type), please reach out to the 24-hr Diabulimia Hotline at (425) 985-3635, or self-research at http://www.diabulimiahelpline.org/. There are people who want to help.
I have never talked about this. Not out loud. Not in writing. Only in my head (and in therapy).
Disordered eating is common in the type 1 community. When we think of diabetes and eating disorders, the first though is often diabulimia. According to National Eating Disorder Association (NEDA), diabulimia is an eating disorder that occurs in type 1 diabetics when they reduce or cease taking insulin in an attempt to lose weight1. It is estimated that 30% of women with T1D will be affected by diabulimia in their life. But it is not the only disordered eating that occurs in individuals with diabetes2.
Many people with diabetes (PWD) were introduced to diabetes management by a dietician that taught about counting, limiting, and substituting carbohydrates in the diet in an attempt to “control” blood glucose. This was my experience. I remember when my mom started using Splenda to make desserts – I thought it was gross, but I ate it anyway because I knew that she worked hard to keep me healthy and happy.
As a child, I did not think much about my blood sugar. I had a great team at Children’s Hospital Oakland (which is now renamed and associated with UCSF), and they were always great about reminding me that I could eat whatever I want because that is what insulin is for. Leaving home to attend university is when I began to struggle.
My first endocrinologist outside of a pediatric setting did not approve of my methods of diabetes management or how I chose to eat. She had me coming into her clinic every 2 weeks because she said I was “out of control” with an HbA1C of 6.8. (In hindsight, I should have realized she did not treat many T1Ds, mostly T2Ds with comorbidities and complications.)
I took her approach personally. I stopped eating when my blood sugar was in range and asked for a prescription for the CGM available to patients in 2007 – a Dexcom SEVEN3. I looked at the monitor every 10-15 minutes in the hopes of catching any highs or lows before they happened. It turned into an obsession. I would not eat unless it was to adjust my “flat line” on the Dexcom.
Long story short, after approximately 8 years of living this obsessive life, I began to recognize that what I was experiencing was disordered eating, even if not diabulimia. I slowly turned to low carb meals and protein shakes for nutritional content. After being married, divorced, and moving across the country, I found a licensed clinical social worker (LCSW) who helped me recognize that I was still practicing disordered eating. I wanted to enjoy the taste of food – I just didn’t think it was worth the risk of diabetes complications. What I was not taking into consideration was that it’s impossible to maintain life without proper caloric intake. My fear of failure was clouding my logic.
I do not believe I am completely free of disordered eating. However, dialectical behavioral therapy (DBT) with my LCSW makes a massive difference in everyday life4. I have accepted that I do not have the ability to be perfect and I should not expect that from myself. I was able to heal from the fear instilled in me by my first adult endocrinologist and return to the mentality of my team from pediatrics. I started using grounding techniques when I want to frequently look at my Dexcom (now using G6) readings5.
As with most bloggers, I simply want you to know you are not alone. If you are struggling, there is help available. You do not need to be perfect in order to live a healthy life. But, most of all, blood glucose readings, interstitial glucose readings, and HbA1C labs are simply information we use to make insulin dosing/pump setting decisions and they should not be treated as a report card.
I’m not going to ask you to share your story, as that is a pretty invasive request. Instead, I will ask you to please feel free to reach out to me personally (email@example.com, https://twitter.com/SonjaT1D) if you are not comfortable seeking out your own resources. I love you. I will hear you. I want to help, even if all I have to offer is an ear.