What Nobody Told Me When I Was Diagnosed with Lupus
Written by a spoonie, for spoonies 💜
I remember sitting in the rheumatologist's office when they said the word lupus. And then... I drove home. Made dinner. And spent the next week convincing myself that I just needed to be healthier, sleep more, stress less.
Nobody told me what was actually coming. So here's what I wish someone had said to me.
The fatigue is not like regular tired
This is probably the thing I struggled most to explain to people around me. Lupus fatigue is cellular. It's not "I stayed up too late" tired. It's "my body is attacking itself and using enormous amounts of energy to do so" tired. On a flare day, getting up to make a cup of tea can feel like running a marathon.
Give yourself permission to rest without guilt. Rest is treatment.
Your labs might not always reflect how you feel
One of the most frustrating things is when your labs look "not that bad" but you feel terrible. Lupus is complex. Disease activity doesn't always show up perfectly in ANA titers or complement levels. Keep a symptom log. Bring it to your appointments. Your experience is data.
Building your care team takes time
You will likely have a rheumatologist, but over time you may also need a nephrologist (if lupus affects your kidneys), a dermatologist (for skin involvement), a cardiologist, and others. It's a lot. Give yourself grace while you figure it all out.
Ask your rheumatologist who else they recommend you see based on your specific presentation.
Medications take time
Hydroxychloroquine (Plaquenil) — which most spoonies with lupus take — takes 3-6 months to fully work. This is hard to hear when you feel terrible right now. But it's one of the most important drugs we have. Give it time.
Flares are not your fault
Lupus flares happen. Sometimes they have triggers (too much sun, illness, stress, hormones), sometimes they just... happen. When you're in a flare, you did not fail. Your immune system is having a moment that you didn't choose.
Find your people
The online lupus community saved me. Facebook groups, Reddit (r/lupus), apps like Chronic — finding other people who actually get what it's like to cancel plans because you can't move, to fear the sun, to have "invisible" illness — that community is medicine.
Diagnosed, not defined. 💜
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