Getting Diagnosed in Uncertain Times

What I Learned in 2020 and Why It Matters for Chronic Disease Management in 2025 and Beyond.

Sitting here contemplating what I would write to the community, I was reminded of another time when the world seemed to go to hell in a handbasket. Unlike that time, I had no idea things couldn’t actually “get worse.” I’m not waiting for anyone to ride in to save the day, but I believe we can take a page from history to ensure we don’t make the same mistakes our past selves (or ancestors) made.

With that in mind, I began taking a trip down memory lane three months before the world shut down for the COVID-19 pandemic. It was December 2019, and after years of dealing with random symptoms, I was finally diagnosed with rheumatoid arthritis (RA) and Sjögren’s syndrome. Then, three months later, the world would shut down, leaving me to contemplate two life-altering autoimmune diseases while dealing with the uncertainty and disruption created by the pandemic.

What Are Autoimmune Diseases?

Autoimmune diseases occur when your immune system mistakenly attacks healthy cells in your body. Common conditions like lupus, RA, and multiple sclerosis disproportionately affect Black women. Further, health disparities, delayed diagnoses, and limited access to specialized care often exacerbate these conditions. But there is hope. With the right strategies, you can take control of your health and improve your quality of life.

It was a humbling experience that opened my eyes to how all my healthy habits didn’t prevent me from being diagnosed with not one but two autoimmune diseases. Being the control freak I am, I dove into the research available to understand my responsibilities for managing my chronic diseases. What struck me during my research was how deeply autoimmune diseases affect Black women in general—and the systemic barriers that often delay our diagnoses. My diagnosis came as the result of a routine eye exam covered by my health insurance. While the privilege of access helped me, not every Black woman has the same opportunity for early detection.

Considering the ongoing changes in our healthcare system, especially under the new Trump administration, it’s crucial to ask: how will these shifts impact chronic disease management for Black women? In my humble opinion, without a cure-all pill for autoimmune conditions, advocating for yourself becomes more critical than ever.

Three Key Strategies for Managing Autoimmune Diseases

1. Advocate for Yourself in Medical Settings

Before my official diagnosis, I experienced mysterious food intolerances and sensitivities. When I asked my general practitioner to perform allergen tests, she dismissed me with a dismissive response: “Just avoid those foods.” Still, I insisted on the tests. Though the results came back negative, they weren’t the end of the story—and shouldn’t have been.

Now, I understand that food intolerances can signal an underlying autoimmune condition. I wish I had pushed for more tests and deeper investigations sooner. Here’s what I want you to take away: if your doctor is not proactive or dismisses your concerns, it’s time to find a healthcare team that supports you. I know it’s not always easy, but it’s our responsibility to demand the tests and treatment plans that prioritize our well-being.

2. Integrate Medical and Holistic Approaches

When I was first diagnosed, my doctors prescribed steroids and medication. These treatments helped but didn’t resolve my symptoms entirely. That’s when I turned to the Autoimmune Protocol (AIP) diet, based on research linking nutrition and autoimmune health.

To my doctors’ surprise, my condition improved dramatically. Eventually, I was able to taper off medication and focus on a tailored diet that worked for my body. In other words, now that my symptoms have improved, I follow a more modified version of AIP. Nevertheless, this journey has taught me that you don’t have to choose between traditional medicine and holistic approaches. Instead, you work with your healthcare team to combine the best of both worlds.

3. Find Your Community

Living with an autoimmune disease can feel isolating, but you don’t have to go it alone. During the pandemic, I turned to online communities on platforms like Facebook and Clubhouse. These spaces became lifelines where I could share my struggles, celebrate victories, and learn from others.

I’ve recently joined local support groups in Boston because I desire more in-person communities. Finding your community is essential for effective chronic disease management, whether you prefer virtual or in-person support. If you can’t find a group that meets your needs, consider starting one yourself—you’ll be surprised at how many people are looking for the same connection.

Navigating an autoimmune disease can be overwhelming, but you don’t have to face it alone. Remember to advocate for the care you deserve, explore a combination of medical and holistic treatments, and build a community that supports your journey. Doing so can transform your experience and help you live a more fulfilled life.

Join Us to Stay Informed and Inspired

For more tips and strategies on managing autoimmune diseases and improving overall health, subscribe to the EBWH Community newsletter. Together, we’re building a space where Black women can access the resources, knowledge, and support we need to thrive.

With love and determination,
Tomesha

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