Fighting for the Right Diagnosis: How One Woman Discovered Her Type 1 Diabetes

When you don’t feel well, you trust doctors to guide you toward answers. But what happens when the answers they give are wrong?

Early Symptoms Brushed Aside

Zorya’s journey with diabetes began in the summer of 2020, right in the middle of the COVID-19 pandemic. Like many people, she navigated the stress of an uncertain world, working from home with her husband and trying to manage the daily anxiety that came with it. When she started feeling run down, she chalked it up to stress.

“I remember not feeling well, just exhausted all the time,” she recalled. “But I thought it was anxiety from everything going on.”

The exhaustion soon came with other symptoms — frequent urination, unexplained weight loss, and an overall feeling of weakness. Then, things took a serious turn over the Fourth of July weekend.

“I felt awful,” she said. “My husband took me to the ER, but because of COVID, he couldn’t stay with me.”

In the emergency room, her blood sugar was over 400 mg/dL. The doctors asked if she had prediabetes or diabetes, but she had never been diagnosed before. They gave her fluids, told her to follow up with her primary care doctor, and sent her home.

The Diagnosis That Didn’t Feel Right

The following day, her condition hadn’t improved. By July 5th, she was back in the ER — this time with blood sugar levels over 500 mg/dL. After another round of fluids, she was again told to follow up with her doctor.

A week later, she finally saw her primary care physician. That’s when she was diagnosed with type 2 diabetes (T2D). Her hemoglobin A1c was 11.6%.

“I felt like it was a death sentence,” she admitted. “All I could think was, ‘Oh my god, I’m going to lose my fingers, my toes…’”

Determined to manage her condition, she and her husband completely changed their lifestyle. They cooked more meals at home, swapped sugary coffee drinks for sugar alternatives, ate more lean proteins, and prioritized exercise.

“We weren’t watching what we ate before my diagnosis,” she said. “But after that, I started walking every day, lifting weights, and working hard to get my health under control.”

Her efforts paid off. Within three months, her A1c dropped to 6.3%. It seemed like everything was working—until it wasn’t.

The Warning Signs That Something Was Wrong

For about a year and a half, she stuck to the plan. Zorya monitored her blood sugar, stayed committed to her diet, and continued exercising regularly. But gradually, her fasting blood sugars started creeping back up. Despite doing everything the same, her A1c climbed to 7.5%.

“I was so frustrated because I was trying so hard, and it wasn’t working anymore,” she said. “I kept asking myself, ‘What am I doing wrong?’”

Determined to find answers, she joined a three-month type 2 diabetes education program, hoping it would help her get back on track. But no matter how much she learned and how hard she worked, her blood sugar remained high.

She pushed herself even harder — lifting weights, joining a boot camp gym, tracking every meal — but the numbers refused to improve. That’s when she knew something wasn’t right.

Fighting for the Right Diagnosis

Suspecting that something was off, Zorya requested a referral to an endocrinologist. But instead of getting an appointment, she was met with resistance.

“They told me, ‘We only see type 1 patients,’” she said.

That response didn’t sit well with her. She knew in her gut that something more was happening. She wasn’t going to take no for an answer.

“I said, ‘I need to be seen because what I’m doing is not working.’”

After pushing back, she finally got an appointment. The endocrinologist ordered proper testing, including an autoantibody panel. When the results came back, the answer was clear: she had type 1 diabetes, not type 2.

“I was 42 years old,” she said. “And I was just finding out that I had been misdiagnosed for two years.”

Learning a New Way to Manage Diabetes

With a proper diagnosis, everything changed. She started on multiple daily injections (MDI) before transitioning to a t:slim insulin pump. Instead of struggling to manage her blood sugar with diet and exercise alone, she now had the tools she needed.

Although the adjustment wasn’t easy, it was a relief to finally have answers.

“After two years of fighting, I could finally manage my diabetes the way it was meant to be managed,” she said.

The Emotional Toll of a Misdiagnosis

Misdiagnosing type 1 diabetes as type 2 is not uncommon, especially in adults. Many doctors still operate under1the outdated belief that type 1 is a childhood disease. But as more research emerges on latent autoimmune diabetes in adults (LADA), it’s clear that type 1 can develop at any age.

For her, the misdiagnosis wasn’t just frustrating — it was dangerous. She spent two years believing she had control over her condition, only to realize her body was fighting an entirely different battle.

“I kept thinking, ‘How many people are out there right now struggling with the wrong diagnosis? How many are being told it’s their fault that diet and exercise aren’t working?’”

The Importance of Self-Advocacy

One of the biggest lessons she learned through this experience was the power of self-advocacy. If she had accepted her worsening symptoms as her own failure, she might never have pushed for more testing. But because she listened to her body and refused to settle for an answer that didn’t make sense, she got the care she truly needed.

“If something isn’t working, don’t just accept it,” Zorya urged. “Push for answers. Ask for testing. Advocate for yourself.”

Forward with Clarity

Today, Zorya manages her type 1 diabetes with the right tools, knowledge, and support. While she still faces challenges, she now has confidence in navigating them.

She hopes that by sharing her story, more people will recognize the importance of questioning a diagnosis that doesn’t feel right. Because in the end, the correct diagnosis isn’t just about getting the proper treatment — it’s about reclaiming control over your own health.

“No one should have to fight this hard just to be diagnosed correctly,” she said. “But if you’re in that fight, don’t stop pushing. You deserve answers.”