My Lupus Diagnosis Taught Me To Talk To My Family About My Health
My long road to a diagnosis started in 2007 and continued with the help of my family.
By Janice Thomas
I was diagnosed with Lupus, a chronic autoimmune disease that can cause inflammation and pain in any part of your body, less than ten years ago, but I experienced the symptoms decades before I had answers.
I remember my sister inspecting the lesion on my scalp as she combed my hair when I was a preteen. Still, it was more than 40 years later when a dermatologist confirmed this as a symptom of lupus. There were other signs, like chronic pain. In high school, I remember crying because my bones hurt and insisting my parents take me to the doctor. The visit wasn’t helpful. They didn’t know what to do besides test for sickle cell since I was a Black child.
I have two types of Lupus: Systemic Lupus Erythematosus (SLE) and Discoid Lupus. Research from the Lupus Foundation of America says that Lupus can affect people of nearly any identity, but Black American women face an increased risk. We develop Lupus at three times the rate of white women. We develop Lupus at younger ages and are more likely to develop severe cases.
My path to a diagnosis really started in 2007 when things felt worse than usual. I had an unrelenting headache, and my skin was so sensitive to the touch that even contact with the sheets on the bed felt like pins and needles. I was also so exhausted I had to take naps during my breaks at work. I was happy to know I wasn’t losing my mind. I made an appointment with my primary care physician, but they said nothing was wrong. I couldn’t accept that answer.
I was frustrated that my provider didn’t seem concerned, so I took reaching my conditions into my own hands. After considerable Google research, I found learned that when you experience severe headaches, the first place you seek help should be the neurologist. I made an appointment at UT Southwestern. That was the first of many times I’d have to take my health journey into my own hands.
The neurologist said I had to have contrast and non-contrast MRIs. The results said nothing was wrong with my brain, so they did a battery of tests. I don’t know what made him run the Antinuclear Antibodies (ANA) test on my blood, but he did. He said the results of my test were more than double what they should have been. About a week later, I saw the rheumatologist he referred me to in his building. I felt better because I knew I could deal with the issues and understand them if I had a diagnosis. I was happy to know I wasn’t losing my mind.
Most of the time, with autoimmune issues, you’ll have the first set of symptoms and diagnoses and get more related diagnoses in the years that follow. My first diagnosis was Sjogren Syndrome–an autoimmune disease that affects the moisture glands of the body, leading to symptoms from dry skin to chronic joint pain.
With time I was diagnosed with Lupus and Rheumatoid Arthritis, two conditions with overlapping symptoms. I was so relieved that it wasn’t all in my mind that the rest was a breeze. I had already been dealing with the symptoms, but the official diagnosis put a name to it. Between getting answers, I found a virtual community online. It was comforting to read stories of people with experiences like mine. It also helped me know where to research my condition.
Early during the diagnosis, my arms would hurt and get really hot. I went to the doctor and found out I had calcium buildup or Hypercalcemia in my bones, especially my shoulder and arms. My doctor made what he called a “cocktail” of medications and injected me with a large needle in my arms to reduce the deposits on my bones. That was 14 years ago, it stopped the pain in my arms, but my joint pain continued.
I took medication to manage my pain. I also researched sites like Mayo Clinic and The National Institutes of Health (NIH) to learn more about treatments and clinical trials. Getting accurate information was important to me. I saw there were many studies conducted around Lupus and autoimmune disease that could help all patients. I also knew that I had more things to anticipate as I watched for my symptoms and had doctor visits as a Black woman with Lupus. I knew that because my skin was darker, the “Butterfly rash” or Malar rash most often associated with Lupus would look different on my skin, assuming I had it at all.
I believe the more knowledge I had, the better I could advocate for myself and help the doctor help me. I’ve seen how the smallest details and symptoms could stand between me and the answers I needed. I knew that doctors were gatekeepers—to a diagnosis, medication, and treatment—I needed to work with them to get what I needed. While I was trying to get the answers I needed, I learned I wasn’t the first one in my family to have Lupus.
We got a call saying a relative on my mother’s side had passed from Lupus. I didn’t expect to hear that she died—but that hearing she died of Lupus was scary. We were in the same age group and I believed she would still be alive if her doctor had listened to her symptoms and gotten her a diagnosis before it was too late. Our family didn’t discuss health and this moment made me wish we did better at sharing that information.
I eventually told my family about my autoimmune disease. It wasn’t a big announcement. I just let my sisters know in a moment that felt right. There was a lot they didn’t understand about Lupus. Even today, they’re still learning about how my diagnosis affects me.
If I could say anything to people with chronic illnesses, I’d say I understand. I know it can be overwhelming. But if you stay on top of your symptoms, it gets easier. I’ve had years of practice that help me know when I’m experiencing a new symptom vs. my usual discomfort. Being mindful of these little details helps me ensure the medical system works for me.
I’ve always known healthy eating and exercise help you feel better, even with a chronic illness. But I wish there was more discussion about what happens when you know what food you need but don’t have the money to afford it.
My chronic illness journey has taught me that the most important conversation in a family is about health status. Those conversations help younger generations prepare for the future. I participate in clinical trials for the same reasons: to make sure future Lupus patients don’t have to start at ground zero on their journey.