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Navigating the Healthcare System as a Black Woman with Diabetes

Taylor Daniele_Navigating the Healthcare System as a Black Woman with Diabetes

Type 2 diabetes runs on both sides of my family, including my parents. As a Black woman, I’m also more susceptible to getting diabetes. In my early 20s, I knew I needed to keep an eye on my health so it wouldn’t be a problem as I got older. I decided to get tested to see where I stood. I wasn’t the healthiest. In fact, after dropping out of college, I still maintained my fast food and binge drinking lifestyle. As I started to navigate the healthcare system and find the care I needed, I didn’t realize how blind I was to the treatment (or lack thereof) I would receive as a Black and Thai woman.

After my experiences, there’s a lot I want other Black women to know. Here’s the tea:

1. Don’t take no for an answer.

The first doctor I saw was a male family medicine physician and he monologued the entire appointment about nutrition while giving me a physical exam. I never thought I’d want a doctor's visit to end faster than that one. He insisted that nothing was wrong with me. I had to ask him three times before he agreed to test me for diabetes so that I could be sure. The test showed no signs of diabetes at that point, but it was frustrating that he wasn’t listening to me. This experience was a defining moment for me, and it influences how I interact with medical professionals now.

When it comes to being a Black woman, it’s hard to find a doctor who listens. You never know when you’re going to encounter racial bias. Historically, many doctors believed that Black bodies were immune to pain. That misperception, and other racial biases like it, sadly continue to this day, although a bit more passively than openly.

Even so, SPEAK UP. If a doctor refuses to test you, then tell them to put it in your chart that they refused. Watch how fast that test gets scheduled after that.

2. Ask a lot of questions and make sure you get answers

I was frustrated that I left my disheartening experience with the first doctor with ZERO insight on what to look out for to stay healthy. In fact, I was practically told not to worry about it. Despite knowing my family history, despite my fear, despite me practically begging for the diabetes test, he’d rather send me on my way than sit there long enough to help me. I was so angry then that I didn’t know what to ask for.

Now, every time I step into any doctor's office, I bring a list of everything I want to cover. When I’m scheduling appointments, I list them then, too. That way, they can’t ignore my concerns, and I won’t forget to mention anything. I eventually started experiencing diabetes symptoms, and I lived with them for quite some time. Had I left that first appointment with information about the signs to look for, maybe I could’ve caught the diabetes sooner before my blood sugar numbers were through the roof.

3. Ask about behavior changes, not just how to treat symptoms

I scheduled an appointment with a new family medicine doctor to get another diabetes test a year later. I’d started experiencing symptoms: my mouth was dry, I was peeing a lot, and I even fainted a few times. I looked them up and it seemed like they were signs of diabetes. I refused to see the first doctor again. I even left a note for the appointment scheduler about it.

I purposely sought out a female doctor, and she was the one who gave me my official type 2 diabetes diagnosis at age 25. She was Asian, like me. She was nice, don't get me wrong. However, she only treated the symptoms. She gave me a pamphlet to read, and mentioned something about a diabetes education class, but provided no follow-up information to find that class. I got a prescription and that’s it. I spent almost a year going to her. When my blood sugar numbers didn’t respond as she wanted, her answer was to up the dose and tell me to count carbs and lose weight. Each time I went to see her, I got a lecture and a new prescription. No one walked me through the everyday lifestyle changes I could make to get healthier, or offered any realistic guidance.

It seemed as if helping me to get better wasn’t her concern. I felt like I was being treated like a child instead of an adult woman. I couldn’t help but wonder, if I was fully Thai or looked a lot more Asian than Black, would I have been treated the same way? Would our interactions have been different if I looked different?

I finally got fed up and switched doctors again. This time, I purposely searched for a Black woman. I needed someone to listen to me. I needed someone who treated me like an adult human being and who wanted to help me change my life, not treat symptoms. I needed someone who could understand my experiences of being in this body and actually help me.

Fortunately, I found a Black female family medicine physician and she was great. When I gave her my list of questions and concerns, she gave it to me straight. She set goals for me. We talked through changes in my daily routines. We talked about what my day looked like. She told me that if I was working in an office, she could write me a note requesting medical accommodations to ensure I got movement throughout the day. If I wanted to do a specific blood test, I got it.

4. Ask if there’s a specialist and if there is, get that referral

It wasn't until I started my podcast for millennial women with diabetes, called Healing In Hindsight™, that I learned I had a lot more options. I remember meeting a Black woman with type 1 diabetes. As I told her my diagnosis story, she asked, “What did your endocrinologist say?”

What the heck was an endocrinologist? You mean there’s a doctor that SPECIALIZES in diabetes?! I saw three different doctors specifically about diabetes and none of them said anything about me seeing a specialist. I was furious.

I finally got my first endocrinologist appointment. I took a risk because I could only find a male doctor at the time. He immediately scrapped my entire medication regimen and gave me a better one. He also prescribed me a constant glucose monitor (CGM) so I could keep track of my blood sugar levels more easily.

However, he lost me when he said that if I just lost 40 pounds, I could get off my medications and diabetes would no longer be an issue. He based this statement on my BMI, which we now know may not accurately assess Trusted Source PubMed Central Highly respected database from the National Institutes of Health Go to source the bodies of Black people, and Black women in particular. We also know that weight loss can be harder for people with diabetes, and it doesn’t always stick. It was time to fire another doctor.

I asked him for a recommendation to another specialist and I was referred to a white female endocrinologist. She and I have been working well together since. She listens to me. She agreed that the weight-centric approach isn’t the best way to create change. We did agree some weight loss would help me, but she didn’t pressure me into anything. She shares my frustration about the red tape I’ve had to navigate to get certain medications covered by my insurance, and is there to help with every step of the process. I think what won me over the most is that she always asks me at the end of each appointment, “Is there anything else I can do to further support you?”

My thoughts on healthcare today

My experience with healthcare continues to be frustrating. Doctors have asked me if I’m laying off the fried foods because for some reason it’s assumed that’s all I eat. No one has tried to help make my cultural foods more accessible. No one has considered that being in a larger body isn’t the problem. I have to always speak up for myself – yet when I do, I’m the stereotypical “angry Black woman,” even when I speak politely.

I’m not saying that everything is bad or biased. I’ve got a great medical team now because I trained them how to best work with me. I know that sounds weird, but it’s true. Until the healthcare system changes, I will keep training them. I will keep being explicit in my expectations of how I should be treated. My existence matters. I need a team that’s going to see ME and respect my body and culture as we work together to manage my health.

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2022 Jul 21
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THIS CONTENT DOES NOT PROVIDE MEDICAL ADVICE. This content is provided for informational purposes and reflects the opinions of the author. It is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified healthcare professional regarding your health. If you think you may have a medical emergency, contact your doctor immediately or call 911.