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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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