I Was Diagnosed With Lupus 26 Years Ago & Now I Advocate For Others With The Disease
It all started with a really nasty cold. I went to my doctor and got a course of antibiotics for the symptoms—but within 24 hours, I broke out with a rash all over my body. When I tried to get up and head back to the doctor, I couldn't move. I was so sore. I felt like I'd been hit by a truck. It took me three whole days before I could actually muster up the physical energy and strength to get myself out the door. During my doctor's visit, I was given some more antibiotics and sent on my way. But I knew in my gut this was more than just a cold.
How my roller-coaster diagnosis journey began.
I called my parents and I told them I was really sick, but I had no idea what was going on. At the time, I was living in D.C., and my parents were in my hometown in North Carolina. Without a second thought, they immediately drove to pick me up from my apartment and took me back home with them.
I think we probably got in around midnight, and a few hours later, I woke up feeling even worse. The next morning, they rushed me to the emergency room at Duke University, where they started running all kinds of tests on me. I was there for a few days, but they couldn't figure out what was going on, so I was released to go home. In the next few days, however, I started retaining water—to the point that I couldn't fit into any of the clothes I'd brought.
Still, without any answers, I tried to go on with my life. I went back to work, but I remember I would start to fall asleep in the middle of the day. I also started experiencing joint pain.
After many more medical visits, I was asked if anyone in my family has a thyroid condition, and I replied that my cousin does. From there, the doctor diagnosed me with hypothyroidism, which felt like such a relief because it was something tangible I could get medicine to help manage. As for my joint pain, another doctor told me I had a connective tissue disease—but it still felt like I was missing a piece of the puzzle.
Fast-forward to many, many more doctor visits. During that time, I started experiencing hair loss and I also had some skin lesions.
Finally, the rheumatologist I was seeing gave me a definitive diagnosis: lupus.
My journey with lupus.
At the time of my diagnosis, in 1996, I was working as a contractor for the National Center for Health Statistics. So I went to the library and I grabbed all the books I could on the topic. I learned that lupus is an autoimmune disease that can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Some common symptoms include joint pain, rash, and fatigue—but it tends to impact everyone differently. After pouring through the information, my first thought was: This is a chronic illness; there's no cure. I didn't know anyone who had lupus, so it all felt very overwhelming and scary.
Instead of letting it consume me, I started to focus on what I could do to manage my symptoms and keep living my life. I got married shortly after, and then a few months later, I found out I was pregnant. There were concerns about my pregnancy being "high risk" given the lupus—at that time, there wasn't a lot of research about the way lupus medication could impact the fetus, so they asked me to stop all treatment. Luckily, during my pregnancy, I felt fine, without any major symptoms. However, about three months after giving birth to my son, I had the worst flare of my life. I woke up one morning and my joints were hurting so badly, I couldn't even lift my own baby. I was hospitalized, and the doctor adjusted my medication to help.
Despite lupus having such a big impact on my life, I didn't really want anyone to know I was sick. I shared my diagnosis with my close friends, but I kept it very quiet at work or in certain circles. I think I worried that people would look at me differently or that it might impact my job in some way.
Still, I wanted to find community and support from people who could understand what I was experiencing. I eventually connected with the Lupus Research Alliance and found out they were planning a walk-a-thon to raise money for research. I immediately signed up! That was nearly 20 years ago, and I've been very involved with the Walk With Us To Cure Lupus program ever since—fundraising, raising awareness, and bringing more people on board.
What I want people to understand about living with lupus.
When you look at someone with lupus, you probably wouldn't be able to tell they have a chronic disease. Personally, there are so many days when I look physically fine but I don't feel well.
I also think it's important to realize that lupus impacts everyone a bit differently. For me, in addition to the joint pain, I feel really tired all the time. I could sleep for two or three days, and I still feel tired. I experience a lot of brain fog as well. Then there are random things that happen, for instance, a couple of years ago, I got a lupus-induced swollen lymph node on my neck.
I also want to note that there currently is no cure for lupus. There is one drug that's been approved by the FDA1 for treatment—but ultimately, we really need more research on the illness. Fortunately, there are many organizations, such as the Lupus Research Alliance, that are working to raise money and give grants to researchers.
Lupus affects a lot of people, but to me, it's still a silent illness. Not enough people know about it, and there isn't enough research.
My advice to anyone newly diagnosed with lupus.
First and foremost, know that you can live a nice long life with lupus. Definitely do your research, and get all the information you can. Be an advocate for yourself, and partner with your doctor in finding out which therapies and medicines are the best fit for you—everyone is different, and what might work for someone else may not work for you.
Also, find your community. Whether that's a loved one or another person with lupus—it's comforting to have someone to confide in about what you're going through.
Marie Byrd Alexander is a daughter, sister, and mother of two. Diagnosed with lupus in 1996, she is passionate about advocating for lupus research, playing an active role in her community, and working with children.
In 2004, Marie started her volunteerism with Lupus Research Alliance by participating in their “Walk with Us to Cure Lupus” where 100 percent of the donations go directly to support lupus research programs. Marie’s work as a Senior IT Analyst supporting the design, management, and analysis of global clinical trials shows her commitment to research, putting the patient first and finding a cure for Lupus. Marie has advocated on behalf of those with lupus on Capitol Hill by making sure the needs of lupus patients are understood by legislators, creating awareness by sharing her story and speaking with local public and state officials about increasing funding in lupus research. She has also provided information on lupus during community events held at Michigan Park Christian Church.