Diagnosed with lupus at 25 after thinking it was everything else (Would love advice/tips)
Hi everyone. I (25F) was officially diagnosed with lupus yesterday, and I'm still trying to process it.
I went into my rheumatology appointment
expecting to hear I had UCTD. Despite having a science degree, I somehow misread my own lab results (brain fog is very real 😅), so I was genuinely shocked when my rheumatologist said something along the lines of: the autoantibody pattern they often see with UCTD was not present in my case, and given my symptoms plus positive dsDNA, she strongly supported lupus.
I was also surprised because I had spent years minimizing and explaining away my symptoms for one reason or another. I wasn't validating how much they were actually affecting my life. I'd become completely blind to what my own normal had become.
Looking back now, the signs were all there.
I used to run collegiate cross country and regularly ran 40–50 miles a week. Running wasn't just something I did—it was a huge part of who I was.
Then I got COVID in 2021 when I was 21. I'd had whooping cough as a kid and missed weeks of school because of it, and COVID was still unlike anything I'd ever experienced. I could barely move.
I never really felt the same afterward.
Since then, I've steadily declined and have been pretty much housebound for the past few months.
I kept thinking it was me somehow. I thought I was running less, eating the wrong foods, too stressed, not exercising enough. I tried everything I could think of to rebound: cleaning up my diet, figuring out food intolerances, reducing stress, forcing myself to exercise, even though I'd often end up sick afterward or my joint pain and fatigue would become unbearable. And the brain fog😮💨… the constant cognitive fatigue. I kept going to my doctor but they were very insistent that they thought it was something mild or induced by not exercising as much, even though I had symptoms pre-covid and the reason I stopped exercising was because of my symptoms.
The more I look back, the more I realize lupus had been quietly changing my life while I kept finding reasons to explain it away.
I've started hydroxychloroquine, and I'm hopeful it'll help with time.
Main question:
I'm an avid reader, so if anyone has favorite books, podcasts, websites, or other resources that helped you after your diagnosis, I'd really appreciate recommendations. And if there's anything you wish someone had told you when you were first diagnosed, I'd love to hear it.
I also plan to post separately later about dysautonomia symptoms I’m dealing with and hair changes/loss, since those feel like their own topics.
Still digesting finally having an answer after spending so long searching for one.
I'm looking forward to learning from all of you.
TL;DR: 25F newly diagnosed with lupus after years of slowly declining health and searching for answers. Labs and symptoms confirmed it. Still processing and looking for tips/resources.