Woman standing in the rain as flowers bloom all around her.

Was There a “Before Lupus” Version of Me?

For a long time, I saw myself as either "before" or "after" when it came to lupus. There was before the diagnosis in 2017 and then afterward. There was also before the first flare in 2015, after which I was never the same.

Maybe some people can clearly see their before and after – a hard line between when they were healthy and when lupus started its rampage. An obvious onset after a specific trauma or other known disease triggers. For others, perhaps lupus rose to the surface gradually, leaving faint traces on our lives that we discover after taking time to reflect.

Thinking I was young and lupus-free

There's a core memory that I tend to refer to when I talk about "me before lupus." Lately, I've brought it to mind a bit too frequently as I struggle to cope as a mom of 2 active boys; one who has to deal with new health issues, a recent surgery, and the painful loss of so much physical strength and independence.

Well, this memory also popped up in my past Facebook posts a few weeks ago. Thanks to the timestamp, I know I was 20 years old and my unsophisticated recounting of the day was as follows, "they set me loose with a pitchfork in the botanical gardens this afternoon. that was fun! and super hard lol."

For clarity, I volunteered to clear out a garden space at my university on a Saturday. I was there for several hours working hard with other volunteers while having fun together. It was sunny, hot, and rewarding.

I often think of that time when I'm feeling frustrated or grieving the loss of my full functionality due to lupus. It’s my go-to "before" example about how I used to be able to do hard things. (My husband has heard the story far more times than he'd care to, I'm sure). I use it to reference how I had a more carefree nature before lupus. I could commit to a task, work with others, and feel the dirt in my hands and the sun on my back before lupus.

But then I asked myself, was it as happy-go-lucky as I've come to picture in my mind?

Starting to question the image of my previous self

As I looked at that memory on my phone screen and let it take me back, I remembered that there was more to that day. I had plans to meet up with family at a baseball game a few hours after my volunteer work. I recall that I went home from the gardens, showered, and took a short nap before I needed to leave.

I remember waking from that nap so exhausted that I could barely move. I would have canceled, but my family drove up to the university just to see the game (and me). It was not the first time I had experienced aching fatigue deep in my bones, but it was probably the first time it had been that bad.

Another part of the day stuck out - the part where I stopped at a local coffee shop en route to the game. Even in college I rarely drank coffee later in the day, so that alone spoke to my tiredness. Despite the coffee in my hand, I remember struggling to make conversation and keep my eyes open during the game. My mind was muddled. I felt confused, as I do now when I’m experiencing a brain fog flare.

Was that experience an early whisper of my lupus? Or was I just an overly tired college student? I can’t know for sure, but it’s certainly called my line between before and after into question.

Coming to terms with reality

There were other signs that things were not quite right throughout my life – how I would get severely sick as a child (I caught strep throat an extraordinary amount). Or how my elbows started to hurt on bicycle rides in my early 20s. Or how I could never quite keep up with my peers physically despite how hard I tried.

It’s been over a decade since that day when I volunteered so heartily and it’s time to stop holding that memory up as an example of what my life was like before lupus. Plus, how does it benefit me to dwell on life before lupus, if there is such a thing?

I want to be someone without so many limitations from lupus, which has led to frustration and discouragement as I’ve continued to worsen over the years. Today, it's more important to accept and thrive within my current reality as best I can. Practicing gratitude won't erase my pain, but it won't hurt my mindset either.

Do you have a before and after lupus moment, or was your experience more gradual?

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