I Was Diagnosed With Lupus — Here's How It Altered My Mental & Physical Health

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.

Trigger warning: This article includes mentions of suicidal ideation.

When I was diagnosed with lupus in 2007, nobody else in my family had this disease, so I had no idea what it was. I was serving on active duty as an Army officer and was preparing to deploy to Iraq at the time.

I went to my primary doctor, who gave me a chest X-ray—and that was when I found out I had fluid surrounding my lungs. A pulmonologist then did some additional testing and gave me a thoracentesis, where they take a long needle and go in between your lungs and ribs to withdraw the fluid.

He mentioned to me that many people have fluid around the lungs, so it wasn't necessarily a big deal. After I got the results, I kept living my life, but when I went back 30 days later, the doctor told me that the fluid tested positive for an anti-nuclear antibody, which meant that I now needed to see a rheumatologist. At this point, I was preparing to leave for another military school and deploy shortly after.

They took me into rheumatology right away and drew about 17 vials of blood from me. When the results came back, it was positive for lupus. And that was when my journey began. So many other lupus warriors take up to six years to get diagnosed, but I was very fortunate in that case.

I was deployed to Afghanistan about eight months later, and that was when my lupus really started to rear its ugly head. My lung was fine, but I was suffering a lot of joint and lower back pain, and I was medivacked back to the States, both for mental health and also for my lupus. I ended up going into stage three/stage four kidney disease. That meant the back pain I was suffering that had left me passing out in front of my soldiers ended up being lupus nephritis.

The nephrologist told me that he didn't know how I was walking around at that time because my protein levels were so high, and that was when I realized how serious this was. With that, I started to take it a little more seriously and got on various treatments. Some worked initially and some failed, and eventually I was diagnosed with neuropsychiatric lupus and psychosis, meaning that the lupus had started to attack my brain and spinal cord. I was hospitalized for six months in a semi-vegetative state, and I then had to learn how to walk, talk, and write again.

Lupus is an autoimmune disease that affects the skin tissues and organs, but it's very different in everybody. Even if two people have the same disease, the pathology can appear differently. It usually affects women, and more specifically, women of color. It could be hereditary, but in my case, no one in my family has it. It could be based on hormones, stress, environment, and more, but really, lupus is going to attack whoever, whenever.

This diagnosis was one that caused me to go through the stages of grief. You start as one person and end up as a completely different one on the other side, and there are so many things that you're used to being able to do that are taken away when you suddenly have these new limitations.

I was diagnosed at 34, and having lived with it for 15 years—and right now I'm living my best life. But if I looked at the Toni that was diagnosed in 2007, I wouldn't have thought that I would be here now, especially with neuropsychiatric lupus.

I suffered from hallucinations and delirium, and my mom came out to be my caregiver. She later told me that one day when we were driving to go to my infusion, I jumped out of the car at a stoplight and tried to strip naked in the middle of the intersection. I don't remember it, but there were so many different impacts that lupus has had on me.

There's so much that many people don't know about lupus. Even though it affects 1.5 million people in the U.S., many Americans have no clue what it is unless they are living with it themselves or have family members suffering from it. Don't always judge a book by its cover—a lupus patient is never textbook because we're each so different. We're snowflakes. And even though we all have the same disease, it's different for everybody.

If you're on the outside, it's important to be patient with the person struggling. If you have a friend who was recently diagnosed, go with them to a support group or look online to learn more. Knowledge is power, and with that, you'll be better equipped to help out your family member or friend because a lot of times they won't know how to ask for help.

Reach out to get involved in a support group—that made a world of difference for me. When I was first diagnosed, there weren't any resources yet where I was located, so when I moved to Texas, I got involved with the Lupus Foundation and met other people like myself, which changed everything because I finally had people who had walked in my shoes.

It's also important to get your information from valid sources, especially when you're newly diagnosed so you can build your thoughts off of factual information. That was a key for me, to understand the disease process and the medications I was taking so I could advocate for myself.

I wish a doctor had talked to me more about the implications of some of the medications I was taking because I was in my childbearing years and looking at having children. However, one of the medications I had to take would not let me have kids. Now I'm not a mother because of those medications, and if I had more knowledge back then, I may have chosen a different route that protected both my kidneys and my reproductive health.