We know a whole LADA nothing about, well, LADA. The disease (aka Latent Autoimmune Diabetes In Adults) actually has a ton in common with both type 1 and type 2 diabetes, which is why it’s often misdiagnosed. To close out National Diabetes Awareness Month, we’re bringing the awareness it needs with the help of Mila Clarke (she/her), founder of The Hangry Woman, and type 1.5 diabetic herself.

Tell us about your misdiagnosis with type 2 diabetes.
In 2016, I was just feeling really awful. I had all the signs of having diabetes: frequent thirst, frequent urination, fatigue, weight loss, etc. I went to see a doctor, told him what was going on, and was later diagnosed with type 2 diabetes. He said, “You’re 26, this shouldn’t be happening to you at this point, and we need to get you in gear so that you’re not going to live the rest of your life with diabetes.” For me, it felt like a shame, blame, and stigma conversation, especially because I considered myself super health conscious. Nonetheless, I listened to my doctor and from 2016 to 2020, I basically tried everything possible to manage what I thought was type two diabetes.

I started out trying to make lifestyle changes. When that didn’t work, I got put on oral medications which worked for a little while and then over time stopped working. But after Covid began, I decided to see a new primary care doctor because I needed to go to someone who I could identify with, and somebody who was actually going to listen to me. That new doctor did listen, and recommended me to an endocrinologist who asked if I had ever heard of LADA. Sure enough, that’s what I had—a slow progressing form of type 1 diabetes. Instead of your insulin producing beta cells getting attacked by your immune system all at once (like most people who are diagnosed with type 1 diabetes as children), you end up with your insulin producing beta cells being attacked over time.

How did that rediagnosis impact your life moving forward?
When I walked out of the endo’s office right after I was accurately diagnosed, I sat in the car and cried. On one hand, I was relieved that I finally had an answer. But on the other hand, I was also really angry for being misdiagnosed for four years. That could have been so dangerous to my health in terms of complications or potential DKA. Basically, it was bittersweet because I had an answer, but it wasn’t the answer that I wanted.

It also led to a lot of reflection in how I had been treated in the healthcare system with a type 2 diagnosis vs. a type 1. Also, when I started writing a blog about having type 2 diabetes and the ways that people unfairly judge type 2 diabetics, I was met with hostility from other type 1 diabetics. Then when I shared my LADA diagnosis, it suddenly flipped, and I had people telling me, “It’s not your fault!” I was like, “Where was all this when I was dealing with the first diagnosis?” That said, it’s given me a unique perspective about the treatment of people with type 2 diabetes especially in the healthcare system, but also within the diabetes community.

What can be done to get rid of that stigma you experienced?
A lot of it is language and watching the way that you talk about diabetes. We all get that question, “Do you have the bad kind of diabetes?” Instead of saying things like, “Oh no, I have type 1 diabetes,” “I didn’t cause this,” or, “I didn’t do this to myself,” reframing it in a way that’s respectful to all people with diabetes. For example, you could say, “No one asks for diabetes and nobody wants diabetes, and all of it isn’t the bad kind of diabetes.” Everybody comes from a different perspective about it, but I think it’s all about being respectful about the fact that it’s a chronic illness that takes up a lot of brain space, a lot of emotional space, and a lot of physical space—it’s something that is not easy to deal with no matter how you slice it.

Are there any recs you use that make LADA a little more tolerable?
Yes! I love the following:

  • Organising Chaos has cute stickers that I use to cover my CGM (Continuous Glucose Monitor) to give it more personality! Plus, some helpful items to build a diabetes to-go bag.
  • Skin-Tac always keeps my devices on for their full duration and provides a barrier between my skin and the adhesive so I have fewer allergic reactions.
  • My trusty Stanley Tumbler is always nearby. It keeps water cold forever and helps me stay hydrated to keep my blood sugars balanced throughout the day.
  • My app, Glucose Guide. I love it as a source of accountability with others with diabetes, and I search the recipe library when I’m building out my meals for the week.

What’s your advice for those who assume they might also have been misdiagnosed?
One of the things that helped me was tracking the data. I would walk into my old doctor’s office and say, “I feel like this.” And he would be like, “Okay, so?” But quantitative and qualitative data matters, so if you can say, “This is how I’m feeling when I’m doing this, but this is what I’m noticing in the numbers” at the same time, that goes a really long way with your care team.

I know that health insurance has a hold on who you can see, but if you have the ability to switch doctors from a doctor who is stigmatizing or belittling, make the switch. Your doctor works for you. It’s okay to fire them and find someone who will listen, have empathy, and help you figure it out because that’s the only way that you’ll figure it out.

Lastly, trust your gut. I probably questioned a million times, “Is this diagnosis right?” If you feel like something might be wrong, see a specialist and/or get a second opinion. There’s no harm in doing that, and it’ll save you so much time, money, and grief, and help you end up living a better life with diabetes.