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Looking Back on My Lupus Diagnosis

January 2022 marks the 5th anniversary of my lupus diagnosis. I've learned so many things over the past 5 years, and I've gone through a lot. Two pregnancies, 4 different rheumatologists, over a dozen medications, and too many appointments and blood draws to count.

Getting my lupus diagnosis

Small health problems had been creeping up on me slowly in my early 20s – some back pain here, a little tendonitis there, and so on. Then in November 2015, I experienced a massive lupus flare after a long day spent walking around in cold weather. I had no idea what was happening to my body.

My husband and I were living in Germany at the time, and we had been visiting the Christmas markets in Munich; we walked over 10 miles that day as we explored the city. After returning to our hotel and resting for about half an hour, I tried to get up, but I couldn't. My knees were swollen, my chest hurt, I was so tired I could barely talk, and my fingers were swelling so fast that we could barely wrestle my wedding ring off. Little did I know, it would be nearly 2 years before I'd get to wear it again.

I saw a few doctors in Germany who ranged from rude to politely unhelpful. My symptoms continued to rage out of control. A little over a year later, I returned home to the USA and was diagnosed with lupus after one visit to a rheumatologist. I was flaring with a bright malar rash, which led him to run lupus labs right away.

Diagnosis day

When the doctor mentioned that he suspected lupus during my first visit, I went home and searched the internet for hours. So, when he officially confirmed the diagnosis at my second appointment, I felt like my world turned on its axis – because I already knew how serious the disease could be.

I was thankful to have an explanation and treatment options. But I couldn't help but feel panicked as I drove home from the doctor's office. Those first few months after my diagnosis was grim; I was in a lot of pain, and I was terrified that I would die or suffer organ damage from lupus. Despite my fear, I still struggled to accept the medications that were being offered to me. They were quite intimidating.

How it started vs. how it’s going

I often worry about the long-term effects of having an immune system that's gone rogue, especially when rough patches pop up. But I've spent years learning about it, creating a supportive lupus community, and advocating for good medical care, which has helped me to stay calmer. I also have 2 young boys that force me to focus on taking things one day at a time.

Even though I know people with lupus who have died young and others who've experienced devastating harm from this disease, I try not to let the doomsday aspect control my life. I take the scary meds with gratitude and I get monitored very closely for their potential side effects.

It's hard to believe that it's been 5 years since I learned about the world of lupus. The painful days have gone by slowly, but the years have gone by much faster. Somehow, I still haven't fully accepted my diagnosis, but I am learning to live alongside it.

What was your diagnosis journey like? Have you been able to come to terms with having lupus?

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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