“I Saw 4 Doctors in 4 Years Before I Was Finally Diagnosed With Autoimmune Diabetes”

At 26 years old, Mila Clarke‘s body started to feel like it was falling apart. “I had been feeling really awful all the time,” she tells POPSUGAR. “I was really lethargic. And no matter how much sleep I would get, I was just exhausted all the time.” Mila also found herself constantly thirsty and would wake up most nights drenched in sweat.

“I kind of thought for a while that it was just anxiety from my job,” she says. Mila had been working at a nonprofit, and routinely logged 50- to 60-hour weeks. “I did digital communication, so I always had to be online, and my phone was always buzzing. I just thought needed a vacation or I needed to take some time and step away.”

The symptoms had persisted for nearly three months when an annual physical revealed that her blood sugar levels were extremely high: 323 mg/dL, more than double what the CDC considers the normal range of less than 140 mg/dL, and an indicator of diabetes. Her doctors told her she had type 2 diabetes, a condition that occurs when the body can’t manage its blood sugar levels, leading to chronically high blood glucose.

“My mom had gestational diabetes. And then she was diagnosed with type 2 diabetes, when I was around 10 years old,” Mila says. But even though she “grew up with diabetes in my household, watching my mom prick her fingers and take medication,” the family never talked much about the condition, she says. “Even when I would ask her when I was younger, ‘What are you doing? Why are you pricking your finger?’ she was kind of like, don’t worry about it, no big deal,” Mila says.

But 15 years later, Mila’s diagnosis did feel like a big deal. “I felt a lot of shame. I felt like it was my fault. I felt like I neglected my health, and I was being lazy,” she says.

The way her healthcare practitioner spoke to her about the diagnosis reaffirmed those feelings. Her provider didn’t just say, “You have diabetes and this is what it means,” Mila says. Instead, the diagnosis was framed as, “You’re 26. You’re young. This shouldn’t be something that’s on your radar. Type 2 diabetes is something that can have effects on your whole body, you could lose limbs, you could lose your eyesight – like all of these really scary things,” she recalls. She was also told that she was essentially “ruining her body” and that she “wouldn’t be able to live a very long life” if she continued down the path she was on.

“That was a terrifying moment for me because I was like, I don’t feel like I did anything wrong. At the time, I was eating very well like eating almost all of my meals at home, I was exercising, going for walks with my dogs,” Mila says.

But there was this emphasis from her provider that she would need to apply much more effort and care to her body. She felt like they were “assuming that I was in that position because I didn’t take care of myself, when in reality, my body was like dealing with something that like I was not equipped to handle,” she says.

All of sudden, Mila says, her mom’s resistance to talking about her diabetes made much more sense. “I was like, I bet this is how she felt. And that’s why she didn’t want to talk about it.”

Over the next year, Mila tried several oral medications to tackle her diabetes, but none of them worked.

After being diagnosed with type 2 diabetes, Mila’s doctor recommended oral medications to help manage her blood sugar levels. She would come back every few months to assess her progress, but unfortunately, there was never any progress to report. “Over and over and over – I think we went through this cycle for a year. My blood sugars barely improved,” Mila says. And she was made to feel like it was her fault, like her doctor didn’t believe she was doing enough.

“I never felt listened to,” Mila says. “I felt like the blame was always reflected back on me, rather than trying to adjust the treatment to work for me.”

Finally, she fired her doctor. “I went to another doctor, and she was more empathetic. But I still didn’t feel totally believed that I was doing the right things, and that I was trying as hard as I could. So I ended up going to another primary care doctor.” This time, she specifically sought out a Black female doctor who made her feel more seen.

But another year passed with little to no progress – meaning she was approaching four years postdiagnosis, and she’d seen no improvements in her condition. Mila was exhausted, and told her doctor, “I want to give up. I don’t know what else to do at this point.” In response, her doctor recommended an endocrinologist.

Upon seeing an endocrinologist, Mila discovered that she had been misdiagnosed.

“I told him everything that I was doing and how frustrated I was that I wasn’t improving,” Mila says. And he immediately knew what was wrong. A major red flag for the endocrinologist was Mila’s age. It isn’t often that adults over 30 are diagnosed with type 2 diabetes, he pointed out – and it’s also rare for oral medications not to bringing down blood sugar. “He looked at me and asked me, ‘Well, have you ever heard of LADA, latent autoimmune diabetes in adults?'” She hadn’t.

LADA is a slow-progressing form of autoimmune diabetes, per the Mayo Clinic. It’s often considered a subtype of type 1 diabetes and occurs because your pancreas stops producing adequate insulin. Mila had never been tested for autoimmune diabetes antibodies up to this point, only for her A1C and blood sugar levels. But when given the antibodies test, Mila tested positive for type 1 antibodies and was officially diagnosed as having LADA.

“So from that day, he was like, ‘Your entire treatment is going to change, and we’re going to focus less on oral medications and going to get you on insulin, because you need it. Your body’s not functioning properly and not producing enough insulin for you to be able to regulate your blood sugars,'” Mila says.

Her endocrinologist also explained that Mila would be on insulin for the foreseeable future, a reality that was incredibly difficult for her to accept. When she was living as a type 2 diabetic, she’d always been told that there was hope of reversing the condition and that she could mange it with diet and exercise. “Then fast-forward to being re-diagnosed and being told ‘no, this is going to be a part of your life forever,'” Mila says. “That was a really hard transition to make.”

But she’s learned to use social media as an outlet of self-care and expression.

Mila launched her platform (@thehangrywoman) the week she was diagnosed with diabetes. She didn’t know anybody her age with the condition and was desperately seeking community.

She also wanted to offer up a platform where other people could come to find a more holistic representation of diabetes. She hoped to create a space that didn’t focus on elimination, but rather the enhancement of your life, since in her experience, diabetics are often told what they can’t have, rather than what they can.

When it comes to food in particular, Mila says, it’s been so important to represent joy. “One of my first specialist appointments after I got diagnosed was with a dietitian, and I sat in her office and she asked me what I like to eat. And I was like, ‘Well, I love like rice, beans, plantains, and I love Jamaican food.’ And she was like, ‘OK, well, you can’t eat any of that.'” Mila says. She remembers sitting there in disbelief. “And I was just like, ‘Wait, what? Those are my cultural foods.'” To be told that she couldn’t eat them was discouraging, but also stoked a fire in Mila to find substitutes and unique ways to incorporate them into her diet.

One of her favorite diabetic friendly creations is her recipe for gizzada cookie bars, which she shared with the Washington Post. It’s a spinoff of a dessert that she used to make with her mom, who passed away last year. “I was so proud of that because I got to one, tell a really cool story about times that I had with my mom, but two, I got to share, nationally, a diabetes-friendly dessert that people could actually enjoy at their table.”

Her biggest takeaway about diabetes?

“It’s nothing to be ashamed of,” Mila says. And despite what some people may think, people with diabetes are not inherently lazy or automatically at fault for the condition, she adds. “When you end up being diagnosed with diabetes, you realize that you are literally keeping yourself alive.”

In reality, she says, “I think people who do have diabetes are some of the strongest ever and some of the most fierce advocates for our own health. Because we have to be.”

Each year in the US, an estimated 12 million adults who receive outpatient care are misdiagnosed, and oftentimes, those patients fall within a minority identity, including women, nonwhite Americans, and those within the LGBTQ+ community. That’s why we created Finally, Diagnosed: a monthly series dedicated to highlighting the stories of those who’ve been overlooked by their doctors and forced to take their health into their own hands in order to get the care they deserve.