19 Aug 2026 5 min read Trail Provisions

Dude (Sicks Like a Lady)

One guy's perspective on lupus and self-advocacy.

The bleed didn't ask permission. Spontaneous subdural hematoma. No fall, no hit, no explanation. I thought getting to surgery was the hard part.

It was just a starter's pistol being fired. And we're off. A race to the bottom.

Weeks later the weakness hit. Then pain that couldn't decide where to live: muscles, joints, bones. Had RA since I was a teenager, I filed it under "getting worse." Then the malar rash bloomed across my face, the dermatologist called it dermatitis and sent me home with steroid cream.

The next year of labs swung across the autoimmune map. ANA and Anti-dsDNA positive. Sed rate and white cells up. Thyroid and red cells down. RA factor positive, stacked on a disease already confirmed years before. So he gave me a standing order with Quest. Get labs myself, any time I was flaring, no appointment needed. Sounded like a doctor taking you seriously.

Turns out it was a treadmill built to keep me quiet. Every time I asked about lupus, I got the same wave-off.

"It's rare in men, primarily a woman's disease."

Like my body had read the wrong pamphlet. Creatinine dumping. Kidney and Liver function issues along with imaging concerns to match. Adrenal and endocrine chaos. Internal temperature regulation going sideways, swinging from 95 in summer heat to 103 in winter cold, sometimes multiple times a night. Yet there was no number or scan that would've been enough. Every single time, same script:

"People who really have lupus, have much higher numbers."

A year into that treadmill I was in his office getting cortisone shots for bursitis in both shoulders. I told him what was happening. Weakness with no warning. Fine one minute and on the floor the next. Internal pain so deep it woke me in the middle of the night, writhing and wondering whether I needed an ambulance. Far worse than any kidney stone, I've passed multiple 4-6 mm stones and that pain can be pretty unreal.

He looked at labs that had been screaming the same thing for twelve months and asked...

"I'm wondering, how much of this is because you weigh too much?"

I had RA since I was a teenager. The autoimmune markers were there. So was the malar rash, the vasculitis, and a year of labs while in flare.

And he wanted to talk about my weight.

I'm from the trades. Blunt is respect where I come from. When a guy tells you to your face you're the problem, you fix it. So I took it as exactly that. Deferred to the expert. Lost forty pounds in four months.

A year later, the labs hadn't moved an inch.

Almost three years in I brought him some newer test I heard about, something that could possibly confirm or kill this instead of us circling it forever.

He muttered something about expensive, not covered. Then moved on like he didn't hear a damn thing I just said.

Turns out it was covered.

Three years of standing orders, climbing labs, forty pounds gone and still trimming down. The one time I handed him an actual answer, he tossed it aside.

He didn't believe I had lupus. Said so, more than once, more than one way. Then put me on hydroxychloroquine anyway. Methotrexate too, basically an unnamed experiment. Prednisone to shut the symptoms up. He treated a disease he wouldn't say out loud.

After three months of unreal side effects, I did feel better. Physically, mentally not so much. Then six months in he pulled me off everything. Supposedly concerned about me being on meds I probably “shouldn’t” be on. Looking back, he was clearly experimenting without ever having made that clear. Nice, real nice.

Then it collapsed straight back to the previous version of hell I was in before, and right back to chewing through the same avalanche of shit sandwiches he'd been serving me all along.

To his mind, still no link between the drugs that worked and the disease they treat. Every marker sat above threshold. Said it didn't matter...

"It's low, compared to people who really have lupus."

Same line, three years running. No number was ever going to be high enough, because the number was never the actual problem. I was.

He acted like I was shopping for it. I didn't want lupus. Who the hell does? I could give a damn what anyone calls it. All I wanted was clarity and something that looked like an actual plan going forward.

I stayed in that loop anyway. He's the expert, he must see something I can't. Until my neurologist, almost in passing, asked how the autoimmune thing was going.

He was taken aback when I told him where it stood. He stopped mid-conversation to send my rheumatologist a note on the spot. Thought it was strange the test hadn't already been run. My neurologist ordered it himself to give my rheumatologist a head start. Confirmed in days.

And that asshole actually had the nerve to call to say didn't he appreciate the note he got. Like before I'd even left the neurologist's office that day. I thought to myself, seriously, wtf? I let him finish his little hissy fit and without so much a pause I told him...

"Ok, I hear you. BTW, we're done. And I hope you live an unnecessarily excruciating and miserable life. Just like what you put me through. You evil motherfucker."

Three years of labs, a confirmed diagnosis, and I still found myself editing and weighing it before I’d utter the word lupus out loud. I also became hesitant saying anything to women, which surprised me. Not all women, of course, but enough for a pattern I couldn't ignore: the pause, the look, the once-over, the outright incredulity…

"Are you sure? You know that's a woman's disease."

Not as a genuine question, but suspicion. Like I still needed to be double‑checked by someone who’d know better. Almost like gatekeeping me from a sickness club I never wanted to be in and still don’t.

So yeah, I don't edit anymore, not for anyone.

I’ve been holding this post for almost a year, partly because it still infuriates me on some level. I’m living the consequences of my own deferment and deference to experts.

I also held it back because of how it might land. But that's still editing. If people feel some kind of way about my words, then good. At least they’re mulling it over.

I learned what happens when someone else's authority and expertise become more credible than your own experience.

It cost me years, future options, and quality of life. It moved me further along the disease-progression continuum, with all the pain and suffering that comes with it.

For no good reason.

Deferring to authority has real consequences.

Ask me how I know.

This is what the inside of diagnostic delay can feel like; the part people don’t see until they’re living it.

→ Share this with someone watching a person they care about go through an undiagnosed or untreated illness. Especially if they're not getting the help they need.

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