Mom Busted In and Said, “What’s That Noise?”
I’ve spent most of my life negotiating with pain.
Not outright denying it, just downplaying it. Explaining it away. Telling myself I was being dramatic, sensitive, anxious. That voice has been with me for years, and it can be very convincing.
Recently, pain busted through the door. The noise turned out to be a kidney infection tied to lupus nephritis. But it didn’t announce itself clearly at first. It did something sneakier. It crept in, distorted, confusing, exactly the kind of thing that makes you second-guess yourself when you already live in a complicated body. Started out as mild discomfort, then moderate cramping. Then came the nausea, pelvic pain, and a sense of fullness that just feels gross.
Day 4 - At my first doctor’s appointment, I was already in significant pain. Something to know about me, I am not a rush to call the doctor kind of person. Remember, gen-x here… we take a shower and hope it goes away. After waiting 24 hours to be seen, I parked, shuffled in, did my best to explain what felt wrong while minimizing it at the same time. When I came back out, my car was being towed.
I had to run (actually run) out to stop them.
Holding my lower abdomen.
Writhing in pain.
Humiliated, frantic, trying to explain.
I still got hit with a $150 fee.
There’s something uniquely cruel about moments like that, when your body is screaming, but the world just keeps enforcing rules (accountability check: this isn’t me playing the violin here; I did inadvertently park illegally). Our culture says to be well and be functional. Be sick but don’t inconvenience anyone. That day lodged itself into me in a way I didn’t fully understand yet. After that was sorted out, I admit I felt a slight wave of healing momentum. My thought was that at least I have an antibiotic, and I can go home.
Day 6 - The first antibiotic I was given didn’t work. Not because my body failed to respond, but because the bacteria were resistant! But I didn’t know that yet. All I knew was that I wasn’t getting better. I was getting worse. And that’s where the real battle happened.
I questioned myself constantly.
Am I overreacting?
Is this just another flare?
Am I really sick or just being a punk-ass?
When you live with autoimmune disease long enough, you become fluent in doubt. You’re used to symptoms that don’t show up neatly on charts, nothing is ever textbook. You’re used to being told to wait, watch, manage, live with it.
So I waited. I deliberated. I tried to be “reasonable.”
Day 8 - Ok, it’s embarrassing at this point. Still suffering, I finally went to the ER, fully prepared to be dismissed. Fully prepared to feel stupid for showing up. Fully prepared to be told this was something I should’ve handled at home. Instead, it was the best decision I made.
The ER doctor didn’t just understand bacterial infections; he understood how infections behave in a lupus patient. How immunosuppression changes the rules. How pain in this context isn’t noise at all, it’s information.
Tests were run. The resistance was caught. The treatment changed. And for the first time, I felt the shift, not just in my body, but in my nervous system.
Relief isn’t just physical.
Relief is being believed.
This experience cracked something open for me. I realized how close I came to putting myself into real danger. How easily “being tough” can turn into being silent. How self-advocacy isn’t obnoxious, it’s survival.
I’m healing now, and listening in a way I never did before. Not with fear, but with a much deeper respect. This body has been signaling for a long time. I’m finally responding instead of rationalizing.
If you’re hesitating right now and playing the game of deliberating, doubting, telling yourself to give it one more day, this is your permission slip.
Go in. Ask again. Speak clearly.
You are not wasting anyone’s time.
Sometimes, the moment pain busts through the door it legitimately needs to be checked. Sometimes re-checked.
It’s the moment self-advocacy finally gets loud enough to save you.
Be well, Kristin
To better support emergency room visits I made a printable medical card below. Download is free. Keep in wallet. ↓
For anyone unfamiliar: lupus nephritis is a serious complication of lupus where the immune system attacks the kidneys. It can blunt normal immune responses, mask classic infection symptoms, and make otherwise routine infections escalate quickly. In a lupus body, pain and illness don’t always follow the usual rules, what looks mild on the outside can be dangerous on the inside.
If You’re Navigating a Complex Illness
A few things that helped me and might help you:
Write symptoms down, even if they feel messy or contradictory
Note what isn’t improving, not just what hurts
Say the words: “This is different from my baseline”
If you’re immunocompromised, say that early and clearly
If something worsens after treatment begins, speak up quickly
Advocacy Language
1. Context is key
Say this early and clearly: “I have (insert current condition). I am immunocompromised, and this is different from my baseline.”
2. Name What’s Not Working
Don’t minimize. Be specific.
Symptoms began on: __________
Symptoms are worsening / not improving
Current or recent treatment: __________
Response so far: no improvement / decline
If applicable, say: “I’m concerned about infection or treatment resistance.”
3. If You Feel Dismissed
It’s okay to say:
“I’m worried my underlying condition is complicating this. I’d like that taken into account.” or “Can you help me understand why this wouldn’t require further testing?” Questions are advocacy.
One Reminder (Read This Twice)You are not wasting anyone’s time.
You are not “bad at being sick.”
You are allowed to take up medical space.
Download your Free printable Medical Card below ↓
Complex illness and fear can often cloud our thoughts. I created this free printable medical card to support emergency room visits. Save it. Print it. Keep it close. When the hard days hit, a little preparedness goes a long way.
