Advocate for Yourself: How to Navigate Diabetes Care as a Person of Color

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This guest post is by Ariel (Lawrence) Sarpeh, a public health professional and diabetes advocate. She has devoted her advocacy to creating representative and inclusive diabetes spaces to help address disparate diabetes outcomes for people of color. Ariel has lived with type 1 diabetes for 18 years. You can find more of her work on her blog Just a Little Suga’ and on her Instagram page.

I’m a Black woman with type 1 diabetes, and I’ve had several disturbing interactions with healthcare providers who didn’t treat me with respect or as a knowledgeable partner in my own care. I’ve realized that if I’m not prepared to advocate for myself, I might not get the attention and treatment that I deserve.

As a public health professional, I am also keenly aware of the disparate impact race can have on health outcomes. Americans of color — including people with African, Hispanic, Native American, South Asian, and East Asian heritage — have higher rates of diabetes complications and are less likely to access high-quality healthcare. I’m also well aware that these adverse outcomes experienced by Black people and other folks of color aren’t limited to diabetes. These gaps are a legacy of America’s history of medical racism, “inflicted on historically marginalized racial and ethnic groups in the US,” coupled with implicit bias in healthcare providers today.

I think that in order to be healthy and well, you need to have a good partnership with your healthcare providers. When I go to the doctor, I want to be engaged. I want to share my ideas and hear their recommendations. There are so many things out of my control, and no matter how much research I do on my own, I don’t have the resources to address everything. I want feedback from a professional.

But when you’re a person of color in the United States, it’s not always easy to establish a trustful partnership. One of the realities for minorities navigating American healthcare is that even wealth and education don’t guarantee quality medical treatment.

While I alone can’t undo the ways history and racism have birthed an unjust healthcare system, I can be intentional about advocating for my own healthcare journey, and teach others to do the same. Here are some practical tools I’ve employed in my own healthcare journey that have left me feeling empowered. They give me a greater sense of ease as I interact with a variety of healthcare professionals. 

Be honest with yourself about your concerns.

People of color with diabetes are less likely to feel empowered or supported, and more likely to feel anxious, during their healthcare appointments.

When I was a teenager with type 1 diabetes, I remember feeling judged. The way that my diabetes educator looked at me when she told me what my A1C was, I remember feeling tension in the room. Perhaps I was making it up, but that’s how I perceived it at the time.

Situations like these, coupled with the dismal state of health inequality, make me self-conscious. It’s always colored my experience with medical professionals. Sometimes I have to check myself — am I being too sensitive? Or is there something wrong happening here? Maybe something that my provider isn’t even aware that they’re doing?

If you’re feeling nervous about your appointment, it’s important to understand why you’re feeling that way. If you’ve had negative interactions in the past and you’re afraid that it might repeat itself, I think it’s important to own that.

Be honest with your healthcare provider about your concerns. 

I understand doctors’ visits can be short these days, but that doesn’t mean you should be afraid to take up space or have difficult conversations with your practitioner. Are you feeling a bit wary after a negative interaction with a provider in the past? Say it! Are you concerned that you’ll just be viewed as another number or deemed less important because of your race? Say that, too.

When I was pregnant with my first child, I came into my OB-GYN’s office ready to share all the statistics on maternal mortality rates. With a growing awareness of how my blackness jeopardized my chances of having a healthy, complication-free birth, I needed to make a statement. I said to my doctor, “I don’t want to be another statistic.”

It might seem excessive, but it worked. My doctor carved out extra time to talk with me about what I was feeling, and it helped us establish a relationship of trust.

I think that when I’m honest about how I’m feeling and where I’m coming from, most medical providers are able to take a step back and consider how they can encourage and reassure me. I think it can have a tremendous impact. When I share my concerns and my vulnerability, it helps disarm both of us.

Ask more questions.  

Need insight? Ask questions, regardless of how you think you’ll be perceived. If you don’t understand a recommendation, ask if it can be re-explained in simpler terms. If you don’t agree with a suggestion or are unclear on why a certain treatment plan is being enacted — say that. It’s much better to get the clarity you need while with your provider than to return home disheartened or confused. 

Know your why and what.

Be ready to clearly explain what motivated your visit. If you’ve been referred by another healthcare professional, can you share why? Are you clear on what you’re hoping to accomplish in your session? Are you hoping for a diagnostic test, looking for new treatment options, or think you’ll need a dosage or insulin adjustment? Do you just want a second opinion? Come prepared to articulate your expectations. Know your key takeaways and don’t leave until they’ve been satisfied.

People of color in the United States are less likely to be recommended the latest (and most expensive) diabetes technology and medications. Don’t always assume that your doctor will automatically share all the best options with you. Be willing to rely on outside resources for knowledge. 

For me, the online diabetes community has been a valuable resource. I learned a lot from Beyond Type 1 and other diabetes sites and magazines. On social media, I’m an Instagram girlie, but I know that others love Twitter and TikTok for talking about diabetes.

Back in 2016, I asked my diabetes educator about starting on the Dexcom CGM, which I had read about on the internet. If your doctor isn’t offering you every option, you can come in prepared to ask. 

Bring your evidence or whatever information you feel is necessary to support your claims or concerns.

What anecdotes or specific examples can you pull to highlight your concerns? What medication information (type, dosage, etc.) might be beneficial to share? What additional information might your provider need to help make an informed decision?

For example, if I make an appointment with my diabetes educator to discuss an alarming trend in my nighttime sugars, I’ll be sure to have uploaded or synced my CGM/insulin pump before my visit. If I don’t have access to that, I’ll log my carb ratios, carb intake, and pre- and post-meal blood sugars to share. 

Bring a loved one.

I think it’s always helpful to have a partner or family member with you. For one thing, they’re not as familiar with your condition, so they can ask the simple questions you might feel embarrassed to ask yourself. They can provide a new perspective and an objective eye. They’re willing to advocate for you.

A loved one can also help you get over that fear of judgment or dismissal. If I’m anxious about how my interaction is going, a partner can let me know when I’m just being oversensitive. Knowing when I’m being sensitive versus valid in my concerns, allows me to feel more confident navigating these discussions. If there’s a problem, I’ve got someone who loves me to back me up. 

Exercise your options.

Finally, try not to feel limited in terms of your provider options. Not everyone has the option to switch doctors, but if you do, don’t be afraid to use it. Rely on online reviews, talk to friends, and find a new healthcare provider who might work for you.

I’ve gone out of my way to meet with good doctors, and I’ve never hesitated to switch providers if it felt like the right decision. If you’re unsatisfied with the treatment you’re getting, it’s not going to get better by itself. It’s up to you to work the system and find a provider you can trust.