Diagnosis + Diabulimia: QiQi’s Journey
I believe most people with diabetes would agree that their diagnosis is a core memory. I was diagnosed in the summer of 2000, just five days shy of a big birthday—my 21st birthday!
I was showing all the signs associated with diabetes and was diagnosed during what I thought was a routine check-up. I expected to tell the doctor about my thirst, weight loss and excessive urination in hopes of an explanation and some meds maybe—but I was sent straight to the emergency room upon a blood glucose (BG) reading of 19.4 mmol/L350 mg/dL.
Unlike most celebrating their 21st birthday, my celebration was quiet, and it did not involve any alcoholic beverages whatsoever. I was hyper-focused on eating healthy, which at the time equated to lots of green veggies.
I was released from the hospital on August 3rd, 2000 with a prescription for an insulin pen with a 70/30 mix of fast-acting and not-so-fast-acting insulin. What I remember most about my hospital stay is that my doctor said that there wasn’t a cure for type 1 diabetes and that as long as I counted each serving of carbohydrates, took my insulin and checked my blood sugar at least three times a day, I’d be fine. I also met with a registered dietitian who spent about an hour and a half to go over what a serving size meant and how to read a food label.
Talk about being let out of the hospital with a crash course in diabetes self-management… It was like they ripped out a page from the book “Diabetes for Dummies” and released this young person with diabetes into the wild. I’m shaking my head at the thought of it now, especially because not much has changed today. The care a person recently diagnosed with diabetes receives has not improved so much. We’re still left clueless about how to deal with this, especially the mental health aspect.
In my opinion, the behavior a person with diabetes is encouraged to develop by most endocrinologists closely mimics an eating disorder. With a few differences:
- Instead of counting calories closely—we obsessively count carbohydrates (every time we are looking to eat anything)
- Instead of looking at a number on the scale, we’re looking at a number on a glucose meter several times a day.
Whenever we divert from the serving size our dietician recommends, we start to feel guilt and shame. Also, let’s explore the feelings we all have when our numbers are not within range. It can ruin our whole day if we aren’t shown how to deal with these emotions or even to acknowledge them. We begin to feel pretty bad about ourselves because we begin to equate our blood sugar numbers with whether or not we are good or bad people with diabetes, when if fact we’re doing the best we can with what we know and have been taught.
Learning about Diabulimia
I struggled with an eating disorder associated with omitting insulin for about 13 years. I never knew that it was even an eating disorder. I just knew what I was doing was very wrong. I discovered on the internet that my disorder had a name: Diabulimia.
Omitting my insulin to lose weight was a dark and heavy secret of mine. Once I decided to tell a loved one what I was doing, it was freeing. I no longer had to keep the shame and guilt inside about what I was doing to myself. I began to explore why I was doing it and I worked so hard to get to a point where I wouldn’t do such a thing again. I had to reprogram my mindset. It was the beginning of my deliverance from that monster, but I had such a long road ahead of me.
My recovery was not linear. It was not like a smoker quitting cold turkey. In and out of diabetic ketoacidosis (DKA), I stumbled countless times on the way but kept hold of my vision. I didn’t give up. I cried out to God many times and found strength from within. The birth of my two girls was also the catalyst for my recovery. Pregnancy was when I knew I really needed to change.
After giving birth, I used visualization to push through the times I wanted to stop taking my insulin again. I didn’t have any role models to look up to so I was on a quest to prove to myself that I could be my own role model. I could be the girl who is no longer enslaved by diabulimia but now healed and thriving with diabetes.
My parents have been a tremendous support system since my recovery. My mom is happy to be granny-nanny while I’m away speaking at diabetes conferences. She’s seen me go through a dark time and has seen how I’ve turned it into something that has brought me purpose. I am now excited to be a change-maker within the diabetes community as I mentor people who are struggling with self-management.
As a Puerto Rican and Black woman, I didn’t see many people with diabetes who looked like me and I feel it is important that I reach back out to my community and be the role model I needed back then.
I’ve been in recovery for six years now. Recovery does not mean that I don’t still have the thoughts associated with diabulimia—but it does mean I will never hurt myself again.
My hope is that my story encourages other women of color to speak out about their experiences with an eating disorder and diabetes as a whole. We really need more role models so that we can bring about the changes we need to see in our healthcare system.
Read another story about the struggles of diabulimia—My Type 1 Truth: Shedding Light on Diabulimia.