01/31/2026
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10 Things People with Lupus Wish Others Understood 💜
Living with lupus is more than just not feeling well. It’s a daily, often invisible battle with a chronic illness. Here are some things many lupus warriors wish others truly understood:
1️⃣ We don’t “look sick” — but we are.
Lupus is invisible most of the time. Just because we look okay doesn’t mean we feel okay. You can't see organ damage, joint pain, nerve pain, exhaustion, and many other issues we deal with daily.
2️⃣ The fatigue is not normal tiredness.
It’s bone-deep exhaustion that sleep and rest doesn’t fix. It can feel like the flu, jet lag, and sleep deprivation combined.
3️⃣ Pain levels change day to day.
Joints, muscles, nerves — what hurts today may be different tomorrow.
4️⃣ We cancel plans because we have to — not because we want to.
Flare-ups are unpredictable. We hate missing out on things. It is very frustrating for us to not be able to do what we want to do.
5️⃣ Good days don’t mean we’re cured.
Having a better day, doesn't mean we are well.
6️⃣ Stress can make us sick.
Stress is a trigger for a lot of lupus warriors and can cause flares.
7️⃣ Brain fog is real.
Memory slips, trouble concentrating, and word-finding issues are part of lupus for many of us.
8️⃣ Medications can be as hard as the illness.
Side effects, immune suppression, weight changes, mood shifts can be just a few of the issues from medications.
9️⃣ We grieve our old energy, abilities, and life.
There’s a real emotional toll in adjusting to limits we never asked for or saw coming.
🔟 Support means understanding, not fixing.
We don’t need comparisons, or supplement/lifestyle suggestions — we have doctors. We need patience, flexibility, and for the people in our lives to believe us.
💜 If you know someone with lupus: believe them, support them, and be gentle with what you cannot see. We need people to be there in our lives. We don't need you to fix it, because it cannot be fixed. We just need some understanding from the ones we love.
