Diabulimia and Type 1 diabetes

One of our community members, Zahni Terblanche, reached out to us with her story of diabulimia and Type 1 diabetes, and we wanted to share it to shed some light on the condition…

Diabulimia. Diabetes burnout. I’ve been struggling to write this… I feel scared and a little ashamed to share this. But here goes…

Diagnosed with Type 1 diabetes

A small window into my story as a Type 1 diabetic, diagnosed 16 years ago. I was diagnosed with diabetes at the age of 10. Back then, even though technology was evolving quickly, we did not nearly have all the tools available to for people living with diabetes currently. I was told, “In 10 years, there should be a cure…” Still holding all my thumbs and big toes.

I have never really had good control over my sugar. Priding myself with the one time my HbA1C was below 10. And I’m sure you know, that’s less than ideal. Many different doctors, and endocrinologists, said that I am a Brittle Diabetic. Most of them gave up on me over the years, not that they are to blame.

In high school, things really started to take a turn for the worse. I had severe anxiety episodes which in return caused me to feel depressed.

“I feared going low, it usually happened at 3am.
I experienced diabetic burnout.”

Diabetes burnout and diabulimia

It got to the point that I just stopped being a diabetic. I “kept myself alive” with only a few units of long-acting insulin. A fact that baffled my doctors as it should not even be possible. I was in the hospital every three months, like clockwork. The nurses always on their knees trying to get a usable vain. After doing this, I soon realized that I lost weight. I lost a lot of weight. Walking around with ketones and readings in the 30’s made me lose weight. But at what cost?

Between the anxiety attacks, academic pressure I put on myself, personal problems, and low self-worth, it wasn’t hard to completely let my diabetes go. I was tired all the time, moody and always had a migraine. I would not be able to see through my glasses most times as my eyes get foggy from the highs and I was almost always nauseous. But I pushed through because I was losing weight. And I liked it. Die young, but pretty, right?

I did not realize the extent of what I did back then, until now. Three years ago, I was blessed with a baby girl.

Turning my diabetes life around

According to every doctor we spoke to, my beautiful Ellah-Aliyah should not have been here. My HbA1C was 15,6 at the time. I had to have a C-section because she had to be taken out earlier. My eyes started bleeding and I had to choose: am I taking the injections I need to save my eyes, but potentially risk harming my baby? There was no choice really. I waited and did not take the injections. She was born at 36 weeks and straight after I got treatment for my eyes.

I am 26 years old now and to quote my doctor who put it so poetically: My kidneys are leaking. I am 26 years old, and I am on blood pressure medication. I am 26 years old, and my eyes are at risk of bleeding, still. I am only 26 years old, and my doctor said, looking at my most recent results, that he’d be happy with the results if I was on the wrong side of 80.

Understanding diabulimia

Diabulimia. I learned that what I did in school is so common, especially with teenage girls, that it has a name. It is not being talked about enough.

I started Sweetner to help me pay for my FreeStyle Libre sensors and hope to make a little difference in a few kids’ lives. I never expected it to blow up to this extent and I cannot be more grateful! I also got to know many moms of kids with Type 1 who are desperately asking for help with their daughters. I did not share how I was feeling with my mother. Like I said, I was/am ashamed. It’s terrible not doing your part, even when you want to, but feel like you can’t.

“My advice would be to keep open communication with your child. Diabulimia, diabetic burnout or anxiety about sugar levels (high or low) is not your child being naughty. It comes from a feeling of complete hopelessness and needs a sensitive approach.”

Zahni Terblanche

Living with diabetes

Today still, it is a slippery slope for me. I am still struggling with my sugar levels. I am still experiencing diabetic burnout and I still have anxiety. I always said I must have gotten Diabetes for a reason. There must be some way I will make a difference to someone’s life. I am proud to say that being thrown in the deep end at such a young age did teach me important skills, still useful to this day.

It also led me to start Sweetner, and I am so happy to be making a difference, no matter how small, in other warrior’s lives. Thank you for reading my story!

Follow Zahni on Instagram: SweetnerStickers

What to read next?

10 Fast facts about the HbA1c blood test: All the basics you need to be informed about HBA1c.

Diabetes and depression: a helpful guide to know what to do next

Dealing with diabetes burnout: Dealing with diabetes burnout is complex. There is no “one solution fits all” because the experience isn’t the same for ever.