A

Author:

November 12, 2022

By Marie Byrd Alexander

mbg Contributor

Marie Byrd Alexander is a Lupus advocate and senior IT analyst who supports the design, management, and analysis of global clinical trials.

November 12, 2022

While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen’s series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

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 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.

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.

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 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 

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, 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.