Before I was diagnosed with Lupus, I had no idea my life was about to change forever. It all started when I began experiencing sharp pains in my feet. Every morning, as soon as I placed my feet on the ground, it felt like I was stepping on needles, making it difficult to stand or wear shoes. Strangely, as the day went on, the pain would ease up—only to return every morning like clockwork. When I got back to New York, the pain started spreading. First to my wrists, then to my hips and within a week or so my left leg began to swell. I've always dealt with mild swelling in my ankles, but this was different. The swelling moved up to my calves, making it clear that something was seriously wrong.
Search for Answers: Navigating the Medical System
Determined to find out what was happening, I started seeing different doctors. First, I went to a cardiologist, then a foot doctor, and several others. No one could figure out what was wrong. Meanwhile, my condition worsened—I had gained a significant amount of weight, my clothes no longer fit, and my feet were so swollen that I could only wear stretchy sneakers.
Yet, despite all this, I continued going to work every day. One of my most vivid memories was the struggle of simply going to the bathroom at work. I would have to stand in place for several minutes before I could even walk.
Finally, I decided to see a primary care physician. She ran several tests, and my ANA (antinuclear antibody) levels came back at 1280:1—a strong indication of an autoimmune disorder. She advised me to see a rheumatologist, but the earliest available appointment was months away.
The Diagnosis & Second Opinions
At this point, my director at work noticed my struggle and stepped in. She had connections in the medical field and made a call to the head of the rheumatology department. Because of her, I got an appointment that same day after work.
When I saw the rheumatologist, she took one look at me and said, “Based on what I see and what you’ve told me, there’s no doubt you have lupus.” She pointed out signs I hadn’t even noticed—the curve of my fingers, the swelling, and other symptoms.
As she explained everything, I remember hearing her words but not really processing them. Then the labs confirmed it—I had lupus.
My first reaction? I refused to believe it.
I immediately told her, “I’ll be getting a second opinion.” And that’s exactly what I did.
I sought out a holistic doctor, hoping for a different answer. But he confirmed the same thing—it was lupus. I decided to go back to the rheumatologist at my workplace for convenience, but I also kept the holistic doctor in my corner.
One thing that shocked me during this process was the financial burden of healthcare. My holistic doctor’s co-pay was $50 per visit—and that was with insurance! It made me wonder: What about those who don’t have insurance? How can they afford to seek multiple opinions?
Becoming an Advocate: Challenging the System
As I started adjusting to my diagnosis, I began questioning my treatment options. I didn’t want to rely solely on long-term medications, so I asked my doctor about diet changes and holistic approaches.
Her reaction? She completely dismissed the idea.
She wasn’t open to alternative treatments or even discussions about them. At one point, I was even labeled “non-compliant” simply for asking questions and exploring other ways to manage my condition.
That’s when it hit me—so many patients don’t feel empowered to question their doctors.
I started talking to others with lupus and quickly realized my experience was not the norm. As a person of color, I had received a level of care and attention that many others had not. Some people told me they never even thought to ask questions. Others said, “I can’t question them—they’re the doctor.”
I knew I had to do something.
Why Advocacy Matters
This experience opened my eyes to a harsh reality: many people, especially in marginalized communities, don’t feel like they have a voice in their own healthcare. They accept whatever they’re told, without question, even when they have doubts.
That’s why I became an advocate—not just for lupus patients, but for anyone navigating the healthcare system.
If you take one thing from my story, let it be this: You have the right to ask questions. You have the right to push back. You have the right to explore different options.
Advocacy starts with education, and that’s what I want to share through this platform—tips, tricks, and encouragement to help you advocate for yourself in medical spaces.
Because when it comes to your health, your voice matters.
What’s Next?
I’d love to hear from you! Have you ever felt dismissed by a doctor? What challenges have you faced in the healthcare system? Drop a comment below or share your experience—I want this to be a space where we can learn from each other and grow together.
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