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

Toni Grimes headshot

October 8, 2022 — 9:31 AM

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 was healthy on all accounts, when all of the sudden I was doing my physical training for the military and noticed I was having trouble with my breathing. One day I was walking up the stairs on the phone, and by the time I got to the third floor, I couldn’t catch my breath.

The diagnosis came quickly.

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 antinuclear 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.

Once I made it to my next duty station, I went to Walter Reed National Military Medical Center to see a pulmonologist there and they took the fluid off my lungs. They told me that as long as they got the fluid and there were no issues, I could still be deployed. But then, my lungs collapsed. I had to wait a few months before surgery because at that time there were so many service members coming back from Iraq and Afghanistan that they didn’t have the space. And because I was still able to live life with a collapsed lung, I waited until I got to my next active duty station before getting surgery.

Things went from bad to worse.

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 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-vegitative state, and I then had to learn how to walk, talk, and write again. 

Unfortunately, I was medically retired from the military with over 19 years and two months of service. That was when my life truly changed because once it affected my brain I had to learn other coping skills to remember things. I had to go to cognitive therapy weekly for a whole year to get back some of what I lost, and I still haven’t regained it all. I have aphasia and there are times I can’t remember words, so there has been a lot of adjustment and getting used to my new normal.

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. 

It’s interesting because unless you have skin manifestations, lupus really is an invisible illness. People always say “you look so healthy,” but you can never really know—and I do try to keep a smile on my face.

Lupus had a major impact on my mental health.

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 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. 

I also do have PTSD from my service, but having lupus has caused severe depression. I have had four suicide attempts, all based around lupus because I felt like so many things had been taken from me: my marriage, my career, and almost my life (with my kidney disease). People don’t realize the mental toll it takes not only on the lupus patient, but also on their family members and friends. Because it is a chronic illness, there are good days and bad days.

Here’s how I learned to cope.

It’s very hard, but I’m a big advocate for therapy. I’ve been in some form of therapy since I got back from Afghanistan, and now I see a health psychologist as well. We really focus on my lupus and mental health because they interrelate so deeply, and mental health is key. Especially during the ups and downs.

What people should know about this disease. 

There’s so much that many people don’t know about lupus. Even though it affects 1.5 million people in the US, 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.

For me personally, part of my insecurity is because before I was diagnosed I was very strong and independent. I didn’t need help, but now I have to ask for help more than I would like. Being able to know that there are people I can rely on is really important and it takes a lot of stress off.

My best advice for people recently diagnosed with lupus.

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 have 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. 

Tracking your symptoms is also important so you can give your doctor a full picture of how you’re feeling on the day-to-day. Taking that information to a provider lets them have all the puzzle pieces so you can get an accurate diagnosis and the proper treatment. As a patient, you really have to come to the table with all the information because you have very little time with our providers, so advocating for yourself is essential.

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