TRIGGER WARNING: This post contains sensitive content regarding eating disorders.
When a child grows up knowing no other way of life beyond the constant beeps from a glucometer, the smell of insulin (think Band-Aids) and the constant daily discussions of numbers and food, perhaps an outside observer assumes that because it’s been “routine” that this child is going to be “fine;” they’ll be mentally prepared to handle this demanding and isolating way of life long-term because they’re “used to it.” That assumption couldn’t be more wrong.
Living with type one diabetes isn’t just the daily physical maintenance of testing, carb counting and taking your insulin. It isn’t just the need to see your endocrinologist every three months. It’s a required emotional commitment and acceptance that most people cannot fathom.
I’ve lived with T1D for just over 25 years; since the age of 5. My dad, also a T1D, has lived with T1D for 47 years. After my initial diagnosis and first visit with my new pediatric endocrinologist, I simply went home with my dad thinking it was just like any other day. My dad gave me my first injection and although I wasn’t thrilled about it, I was (and still am) such a “daddy’s girl” that I loved the idea that I was just like him now. My Dad started handing over the diabetes responsibilities to me as soon as he knew I could handle them; he knew how important it was for me to be independent and self-sufficient. He taught me to administer my own shots, be accountable for testing my blood sugar regularly and learn to gauge how much insulin I needed based on what and how much I was eating.
By the time I was 8 I was fully managing my T1D all by myself. I was going to sleepovers just like every other “normal” kid my age. I went to Camp Needlepoint all through my young adult years and had all the support imaginable from the pediatric endocrinology team at our clinic. I had a wonderful childhood despite living with multiple chronic illnesses (I was also diagnosed with Hashimoto’s by age 9).
Middle school was a challenge though and high school was even harder. No one else had to worry as much as I had to worry. No one else had to eat a snack in the middle of class, and no one else had to stop in the middle of something because they were “low.” The daily attention that living with Type 1 diabetes requires ignited a deep resentment and sense of anxiety inside of me. I felt that I was trapped inside a failed body that would never allow me to ever feel truly free. So in a fit of rebellion and rage, I stopped taking all of my necessary insulin and started keeping my blood sugars high on purpose. What started out as an attempt to avoid having low blood sugars (mostly while performing on stage) and an honest desire to just not have to “worry” about my diabetes for a few hours, became a dangerous eating disorder that nearly cost me everything: my career as an actress, my marriage and my life.
I lost my joy, my passion and my spirituality. Making the choice to seek help and surrender everything I knew (or what I thought I knew) and accept help in an inpatient facility was the hardest and absolute best decision I have ever made. During my time in inpatient treatment I finally had a safe place to explore my feelings, address my fears and learn from my mistakes instead of punishing myself for them.
I’ve learned so many powerful lessons in the past seven years of my recovery journey. The most powerful lesson has come from being honest with myself, my loved ones and with my doctors. Telling the truth seems like such a simple concept, but after so many years of denial, resentment and shame, I discovered that every component of my life had been shrouded in little lies or “half-truths” that I had been telling myself in order to cope. It wasn’t comfortable in any way to detangle myself from the lies I had told myself and others, but it set me free to move forward without anything holding me back.
My entire way of thinking about myself and my relationships have matured to a level I doubt they ever could have reached without the essential support I received in treatment. Living with Type 1 diabetes is a daily struggle and some days can be incredibly frustrating. However I now have the emotional stability and healthy coping skills to fully face those challenges. Having the right type of support from people who really understand the complexities of a dual diagnosis of type one diabetes and an eating disorder is essential to a successful recovery and a life free from an eating disorder for this unique population.
This is why I started We Are Diabetes. The lack of education, awareness and support for those who struggle with ED-DMT1 (diabulimia) is reprehensible. Even with the growing awareness and slight interest taken from the large scale diabetes organizations and healthcare industry, there is very little change occurring. Instead of being given compassionate support and direction towards capable treatment options, T1Ds are being written off as “noncompliant.” That’s an awfully lazy way to treat a person who lives with a chronic illness that they: a) couldn’t have done anything to avoid, and b) never did anything to deserve. Have you ever heard of someone “getting over” a mental illness with guilt trips and shaming? I’d really love to know if anyone has ever found that approach to be helpful when they were struggling.
In my work with those who reach out to me through We Are Diabetes, I hear the same stories over and over again: “My endo says this isn’t a real thing,” or “My CDE prescribed me a weight loss pill because she didn’t know how else to help me with my disordered eating,” and “I have no idea who can help me with this.”
We Are Diabetes strives to provide these individuals with the information and resources that they need in order to recover. Treatment for the dual diagnosis of Type 1 diabetes and an eating disorder (also known as ED-DMT1) requires a well trained and educated team of healthcare professionals. The process of treatment and recovery is unique for this population and unfortunately not all treatment facilities are capable to safely care for an individual with ED-DMT1.
It’s important for providers who work with diabetic patients to understand that they DON’T need to have all the answers for their patient, especially if that patient is dealing with mental health concerns. However I believe it’s the responsibility of these providers to be aware of (and actually utilize) resources like We Are Diabetes so that together we can help these individuals get effective treatment sooner.
Mental health among those who live with chronic illness is still dismissed or outright ignored. You can’t treat the disease effectively unless you also treat the human being attached to it. My hope is that as time progresses and We Are Diabetes continues to make connections within the healthcare industry, that we see a shift towards more awareness and resources for mental health support!
More reading: I Don’t Want to Hate My Body Anymore by Bryce Taylor and My Balancing Act Overcoming Type 1 Anxiety by Embracing Inner Peace by Alexi Melvin